Thymectomy Part 3: Recovery

The worst part of recovery was changing the bandages. I have sensitivity to tape and prednisone causes thin skin and to top it all off  my bandages were in awkward areas under my breast and lower armpit area. So yes it tore my skin and causing this to be more complicated that it already was after a hard surgery and of course it was still tender.

What I was not ready for was the nerve pain and the nerve damage though I was warned about the nerve damage and possible loss o sensation. I could have dealt with a bit more of this with all the bandage changing. However, the nerve pain was almost unbearable at first. It would be sharp shooting pains and it felt worse than knives cutting into my skins. I was then put on 300mg of Gabapentin 3 times a day. I was unaware this was going to make me sleepy. And yet I was still driving but had no idea why I felt a bit off. My doctor was shocked I had made it to the follow up appointment with that dosage. However, Since I was healing well and I do not like to be on an medication long and they were taking the stitches out about 10 days later I asked to be taken of the Gabapentin since my family make-up has a history of addiction. I also called my neurologist and asked her opinion. My neurologist was very irritated that I was placed on such a high dosage and immediately tapered me down before the hospital doctor could even respond. Every time they mess with my meds my Neurologist are like:

 

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But then the absolute worst for me was the first time I saw it and felt t myself with gloves and how butchered I felt. The holes literally holes in my skin that took months to heal. I literally had to stick my finger just inside one of them daily to pack it with gauze and each day I broke down just a bit. I know it is never as bad as it seems and I am not vain it was just the shock. I just broke down. I thought that was the end of it all though once I healed physically. that’s it.

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Or so I thought

But then started new pains like the numbness that has still not gone away a year later in some parts of my armpit and upper back. And the mental anguish that came with the fact that my MG is resistant to a thymectomy and quite aggressive and requires something more that such a surgery since I never had a thymoma and I was just reaching for anything since at the time they had nothing else. I went through such a process for nothing it seems.

Unfortunately it also seems they wouldn’t let me go through to the phases I get to go through now unless I had a thymectomy to prove how resistant my MG is. That is both a shame and a gift to be one the other side. I just pray that in the future others do not have to go so far if they don’t have a thymoma and they can see beforehand that if they are already so resistant that perhaps just trying the noninvasive treatments first may help. I was going to try Rituximab but in the year since we talked about it an even newer medication with nearly no side effects and less time from work has come out and better results.

I will be doing Eculizumab in the near year. Look for my next post to talk about the benefits of both.

A brighter Future

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Thymectomy day 2 They surgery date

Surgery day was filled with emotion as usual and worry about body order as you have to wash with the most extreme hospital surgical scrub several times the night before to get all body oils ever.
Your body is dry and if you sweat like me from stress you are very concerned about this; however, with as cold as it is in there (for this very reason I quickly put this out of my mind.
You are allowed when you have MG to take your MG meds and they ever tell you not to you are with the wrong specialist and you WILL be sorry as I have learned at my very first surgery every years ago. You will have an exacerbation and they will have to wait hours to begin you surgery after they give you those very same meds.
So ignore ANY doc who tells you not to take them before (at least when it comes to your mestinon type medications). However, this day and age they have since learned their lessons. 5 years ago I had doctors fumbling. My specialists since then have told me what I am telling you (insert funny pic)

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I did not want my mom to leave me and just before she did I sent texts to everyone letting them know I was about to go in after they gave me the sedative (BIG mistake). it was actually something to calm me down before the sedative but I could not see straight or think straight and my texts when sideways quick. I sent the first short ans sweet then the second a few spelling errors. Why I did not mass text I will never know. Then the last was to my boyfriend Philly. and it came out as follows:

Gloo ppl_me n muh t ongue hol my eyes r warpee

If you can interpret this go for it. He still laughs and sends it to me every so often as it he locked the text just so it never goes away. Never going to live this down.

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I believe it was trying to say something like my feels feel funny or I love you or something because I forgot the  love you I am going into surgery now part. However; my mom had me covered on this. Everyone knew this as it was the biggest surgery of my life and they could contact my mom on updates.
Then I was rolled back, they asked me a few questions about my favorite music to calm me as they set up because you know it wasn’t for me as I was going to be sleep, then they gave me a sedative to calm me as they put in the arterial blood line to get my heart rate as I slept. No blood pressure cuff for this surgery. Then I was put out. I woke up in the Thoracic ICU (TICU) and then my parents were there. I was happy for that. But the Pain was there too and OMG. I had NEVER in my life had such pain. It was indeed the worst pain ever like they had broken my ribs. Because in fact everything near them was bruised since they went in near them both on the side and near the sternum through the side. I could not express this feeling enough.

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I was given a squeeze pillow shaped like a heart like the heart surgery patients since it was like open heart surgery but I got to have mine through the side of my chest with the Da Vinci robot instead of through the middle of my chest.
I had a chest tube draining liquid out of my chest hanging from the side.
I felt like Frankenstein’s monster.
I was so upset. You never realize how many muscles need the chest until you don’t want to use them. I could not breathe deeply, cry, cough, which from the surgery you needed too to get the fluid out, I could not yawn, laugh, yell, turn, and walk, far… what’s that!?! I did not even want to poop. I was so scared it would not heal. Then when my parents said they were leaving I cried involuntarily.

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The tears just popped right out my eyes. (they just started again as I wrote this part). I relieve this every time I write but it’s necessary for people who choose this who do not have a thymoma but hope this may improve their MG.

Outside of coughing one of the worst moments when the one time and it ONLY happened once to remember; a nurse helped me to my chair to sit for a bit to and change my linens on day 2. She finished and forgot to put my call bell back near me and I needed to use the bathroom and though I had a catheter it was not a catheter moment and I was in pain on top of that. I was in bad shape. I tried to call for help and did not have enough wind I found. I could not even really get to my regular level I just started crying. Luckily, other med supplies were near my area because the hospital never has space and another nurse saw me and I asked for help and they were a bit indifferent and help me get on a bedside and get my call bell. I felt so thankful, embarrassed, and exhausted. I went to bed not long after.

You stay in ICU until your vitals stabilize and they can find a room for you.
This took 2 days for me. They were packed.
Keeping your pain in Check was VERY hard you had to stay AHEAD of it before it creeped up, there was no, well maybe it will subside. Every thing was on a scale of 1-10. You had to not let it get above 4 because by the time they were able to get back to you even if it was 10 minutes later mine shot up to an 8. I got smacked often with pain like well like this:

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No but seriously that was more like the 4

The 8 was like a ghost was doing this to my ribs:

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And my lucky day before leaving I hit an 11 finally and they almost kept me for additionally days because it took over 3 that time hours to get the pain to come down fearing infection and even a stroke in my neck and left arm.  that felt like:

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I didn’t even see it coming

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I had never experienced anything like this. Even with the normal encounters during this visit it only took about 2-3 hours for the pain to subside. Each time the nurses would work mercifully trying to help me. Nurses are awesome. I tried to do so much on my own and for once during a hospital stay I could not and they did not want me to.

They kept making me lay down and would only let me walk on my therapy walks or to the bathroom. I was embarrassed to ask to get help to be bathed and groomed. I am so used to being independent. When I finally got the tube out I was happy but I was far from recovered little did I know. Mentally and physically.

Part Three WILL be here tomorrow!

My Hiatus Before Continuing….

I would love to just continue where I left off in my last story but I have that seems a bit crazy if any of you follow me and have wondered where in the heck I have been. Also I owe you a big apology. I apologize! I am back and glad to be in a better head space. To sum it up I went on a horrible depressive stance for the last year. I was terribly lost.

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A divorce, losing a job that I thought somehow I could find a career with even if not with that company, and then losing my home was just more than I could bear, then the catalyst was the biggest surgery of my life that did not change anything for me. It opened my eyes and perhaps the eyes and it also caused my team of professionals to become more blunt with me possibly out of pure sympathy and not so much out empathy anymore. They now are now not just saying the hopeful things and pumping me full of hope like before the surgery which we all need but they are actually finding more ground breaking method that are less invasive and more aggressive that have more research and coming to me with that and letting me decide based on that first.

They saw how broken I had become and now they know how resistant and aggressive my MG & migraines and other symptoms are. They have now offered me and have come up with a few solutions. I am so thrilled and this truly gives me so much hope and delight.

Now back to our regularly scheduled program

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Thymectomy Surgery Part 1: 2 Weeks Before- the Morning of

The 2 weeks leading up my thymectomy were perhaps the most stressful 2 weeks of my life. I went through the full gambit of emotions. I worked for an organization where my role changed so much that I was no longer doing what I was hired to do and neither us believed it a good fit. So I became jobless 1.5 days before I was suppose to go on leave.
I had to switch insurance companies just after having switch insurance companies 30 days before that to the organization’s as they finally just offered insurance to all employees.
It was bananas.
Then to get prepared for such a surgery you have to go through what seems like a million doctors appointments. Each case is different but mine seems to be especially different. I was someone who was never really sick and had no disease or conditions before MG; however, now I have I huge team of doctors.
I was able to still teach fitness classes for over a year after being diagnosed even with an agressive case of MG because I was so fit.
However, my breathing became an issue. It started to become more and more shallow and I had more wheezing with the exhale of it. They call it stridor.
Symptoms like the difficulty chewing, swallowing, and talking that I had when first diagnosed tapered off. Even the issues with small muscles like my fingers. They became stronger. They were later replaced with more eye fatigue and upper body weakness. Though the latter was always there, it seems to be the only regular symptoms that remain. I do not typically go into crisis anymore and have not in years thankfully. Which led me to ask about children and a thymectomy.

So to prepare in the 2 weeks prior:
-I had an IVC filter placed because i had a history of blood clots due to birth control
(this will be done likely for anyone who has a history as a precautionary measure so they will not have to worry about something going wrong)
-The doctors will schedule you for removal at this time too
-To get you strong you will have a series of plasma treatments usually about 5 (so you are as strong as possible, this will be done over the course of 2 weeks and every other day to give the body’s fibrenogen time to recover)
-Then you will have a pre-operation appoint with anesthesia we all know how this goes, just to be sure you know what to do the night before (no deodorant, no lotion, nothing AT ALL on the skin, use the antimicrobial wash) and you feel like a scaly lizard but somehow still trying to look nice

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The night before
– You get no sleep
– You try to remind yourself to eat and stuff yourself silly if possible because it’s your last meal for what seems like forever

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– No food or drink after midnight replaying itself over and over in your head and any other time you would care less and get up at 10 and not even care that you haven’t eaten ( maybe even get through a whole work day and forget to eat, OH BUT NOT THIS DAY)

The morning of

-Come in like a zombie prepared to eat cover on the phone because it has the apple icon on it and mad because someone already took a bite out of it.hungry nicki minaj GIF

-Then registration, every nurse, and the doctor reminds you which surgery you are having and you repeat your name and birth date a thousand times ( I swear I wanted to record it on my phone and just hit replay for them):

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-In my case the procedure I was getting was robotic- with the Davinci machine where they make 3 small incisions on the right side of my rib cage is how it was explained
-The docs tell you the risks:
You may have to be placed in TICU (thoracic ICU)
You may have to keep the breathing tube in if you cannot breathe on your own
You may have to keep the chest tube in

My suggestions:

Come prepared with questions:
-Do you have the option to do your prior 2 weeks of plasma treatment outpatient? I did my plasma treatments to get stronger the 2 weeks prior outpatient to reduce the risk of infection during cold/flu season (since it was ath the hospital) Also because I wanted to keep going to work right up until I went out for leave…
-What they will do to manage your pain
-What is the longest time you may stay in the hospital and wrap your mind around it
-Will you receive additional plasma treatments after surgery when/ while admitted
-Will you go back to regular treatment methods once you leave the hospital?
-Make sure that neurology gives a list of contraindicated procedures and meds over to the dept/ nurses taking care of you during your recovery ( I was not in neurology thankfully and my surgeon is a thoracic surgeon so the nurses needed this info brought to them from another area of the hospital (easy enough).
-Last are there any medications that you may need t bring from home that they do not supply at your hospital, mine does not keep EMLA creme (the lidocaine creme for ports, so if I were to get treatments I needed it and brought it)

What to Bring

Bring slides

Bring a robe if they do not supply one

Bring headphones or earplugs

You will learn why in part 2, stay tuned….

 

***please remember these are my experiences and no 2 experiences are the same, please speak with you provider about your needs***

Stupefy

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‘What’s the name of the spell that paralyzing people in Harry Potter?’, asked Philly. We were laying in and he randomly asked me this.

I sat for a moment, caught off guard, said huh and then responded stupefy! I have no idea why I said huh first it seems to be a reaction at times because it hits my ears or maybe even my brain late.

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I don’t know if his mind was still reeling from earlier that night or what but he seemed to be pulling one of my numbers and making the punchlines for me. Earlier that night I had the most intense cramps in my calves I had ever experienced in my life. They were so bad that I could not walk, could see the muscle spasming, and literally took my breath away each time it jumped. I thought we might have to go to the hospital because unlike the first time I experienced blood clots in my legs this time I was nearly certain that I might have some.

I have NEVER felt this sort of pain in my legs before. I screamed in pain and the pain lasted for well over 30 minutes. I could not ever touch the area to begin with. Philly was beside himself. However, he would not show this of course. He tried to massage the area which hurt, then he tried to massage my feet which helped at first. Then that didn’t work. Then he tried to get me to sip water. We realized immediately I was severely dehydrated. Moreover, he he was trying his best to calm my breathing which has suffered greatly from the stress of it all going on about an hour at this point.

He sounded like my Lamaze partner,

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coaching me through deep breathing exercises and giving me encouraging words and rubs on my back while holding me. Ok maybe he wasn’t that intense but he was quite soothing after I was able to relax

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It was like a combination of the 2 in my mind

But eventually he also remembered I probably needed some magnesium after a bit of research and got me some dark chocolate. I was a bit reluctant at first since I thought part of the reason I was in that mess was because of the dehydration from salt and sugar and sweating all day with little water. We had a state fair extravaganza and my poor body had been through the wringer.

I even spent the rest of the weekend so afraid of those cramps again I barely did much else. I will say this, I will be stocking up on gatorade and pedialyte pops ASAP to replenish what was lost since I let myself get so run down. This is not like me.

I have to be careful I am too close to my surgery to sabotage it and I do not want to jeopardize me in general nor scare Philly like that again. My MG scares or health scares seem to come out of no where. We are having a good time watching t.v. or eating and then boom. Poor thing.

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It was Fair

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Bells, whistles, ferris wheels, cotton candy, funnel cakes, and tons of walking. Yes its that time of year. When the weather turns a bit chilly and the state fair comes to town. I went today with Philly and had a ball. It was his first time going to the fair in North Carolina. He actually enjoyed it.

We went before it got to packed. Less people children and annoying sounds, I guess missing the point of the fair. Philly was like, wait so people pay $10 to come in and people watch and walk around and then pay more money to do everything in here? His face like we were all stupid

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And I was like no, there are free concerts, shows, galleries, meet and greets with local celebrities and regular celebrities (sometimes), and demonstrations. But yes, there are MANY things here that you have to pay for. His face then

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I only do amusement park rides because I dont trust rides that are thrown up in a few days and taken down just as quickly.

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So I’m one of those people that just goes for the food.

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But before you judge me

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Know that i only really eat like this once a year. I know you make be thinking yea right but hear me out. Fair foods only come once a year and the funny part is that i do not even get all things that are traditional fair foods. But i have to have these items each year at the fair and i have specific vendors I will only go to and get them.

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I must have an Italian sausage with peppers, a gourmet funnel cake (each year i get a different one but always at the same vendor- this year it was a turtle brownie funnel cake), and vanilla ice cream with rainbow flavor burst (gel piping around the curves). As usual the cone was bigger than my head!

Philly enjoyed the sounds and smells too. We even went to enjoy one of my favorite games beat the guesser. Where the person guesses your age, weight, or birth month. They have to be within 2 years of your age, 2 months for your birth month, and 3 lbs for your weight. I always do my weight because they are never anywhere  near it. The man looked did a complete assessment was spot on with everyone else that came near him and when I walked up was under by over 30lbs. It always happens. It makes me feel better for sure.

Philly was tempted to try his age but didn’t I think he should have. No one ever gets it right! I won a purple rabbit, only because there were no blue ones (I love blue and I love rabbits).

I saw this look on Philly’s face.

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He said so what (as a chef) people can charge whatever they want at these booths and no one questions that 2 booths down it’s the same thing? How do I get into this?

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Next year Philly has learned that the earlier the better. And he just may have a booth next year so be on the look out for him!

It was an awesome day.

 

Blogger Habits

You are sitting in bed thinking about how you grew up and nicknames and how you got them and how crazy these names sound and how you have basically named everyone around you. How these are badges of honor.

Or the rant about people at work cannot just say certain things and to you they way they do or do certain things with certain expectations and you had some whimsical witty punchline.

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Then there is the ever comical/ or serious moment that happens to you that you have been meaning to tell your blogger community and has just been slipping your mind or you have not had time for and you have wrote or re-wrote the story a million times in your head and yet to actually put it to paper (typed it).

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I know I am not the only one who has this habit. I do this at least once a day when I do not actually blog. I actually talk out loud or nearly talk out loud the blog that I would have written that day. I think sometimes, what a missed opportunity to share with you all. Sometimes I get mad that I cannot remember that awesome punchline that seemed so great and I had perfectly in mind just moments before and could not get to my computer or paper in time. It just leaves me. I give it to you universe.

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It’s like the novelist or poet. I just get so annoyed.

I know this can get better when I am not as stressed and when I just allow this to happen but I also know that with more regular practice like when I first  started blogging this is less of a frequent occurrence. I must get my mojo back.

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ASK ME ANYTHING ABOUT MG

So I realized that there are quite a few people who follow my blog and whom I follow that have MG or some sort of autoimmune or muscular disorder. I wanted to take this chance before my surgery next month to give you all a chance to ask me anything about my symptoms, feelings, thoughts, or experiences with Myasthenia Gravis. It can be about the past, present or the future and I will answer it. I will keep your name anonymous if you wish it and you can send me an email or simply reply to blog with a question. I feel that sometimes this is the best way to help one another out in the community as well as just relate to one another.

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Learned Helplessness Pt. 2

I wanted to expound a bit on learned helplessness. Philly and I had a discussion about learned helplessness in an indirect manner. I realized that he as many of us do in some manner or at some point in life suffers from it. He suffers much more than most and his is from dealing with many negative situations that he believes he just ‘deals’ with and says it’s life and moves on with. When in actuality they beat him up leaves hard scars and he voices his feelings about them often because they still bother him.

I never mind hearing about them, but when someone voices their feelings about something frequently, it does bother you and most definitely you are not living life, over it, or any of those other phrases people like to say they are. Now Philly has used a few of these phrases but I am speaking now to the masses here so understand that. I merely use him as an example to get my point across.

When you become accustomed to life, a situation, or a person constantly beating you up you can forget that this is not normal in life and it can become your normal. You begin making every excuse as to why this is YOUR life and applying it to all the exceptions to your life as well. Such as all your shortcomings (gender, race, age, weight, health, education, social status, etc…).  You being saying why you cannot find the positive situations and it alienates others from you. It becomes hard for others to be around you because they find it hard to constantly pull you out of the negative loop you have created.

The Saboteur

Every new person you meet does not know your past. You have a chance to recreate yourself. To show them a new you. To begin fresh. Yet because you are so conditioned to the negative past you refuse to show them that new you, you believe they will treat you like all the bad exes, so you begin testing them and sabotaging the relationship. You become suspicious, or you are half interested.

The Rude/ Mean Person

You throw out rude mean comments and clear them up as a joke once you realize you may have hurt the other person’s feelings. Your friend/ partner may laugh these things off initially but eventually they will realize this is not cool and that you are in fact not a nice person. They may be superficially interested in you and once this phase wears off they will say even more hurtful things. Sometimes the hurtful things are never about you, but about others and this may also be a sign. They are lashing out. They are constantly finding everything wrong with the world and everyone else. Nothing is good about the world EVER, not even when you point things out. This can be a hard pill to swallow for a person who is really nice and cheery (optimistic). You will find yourself needing outlets and a social network just being around this person (they will rarely if ever uplift you). You will find that you will consume yourself trying to do that for them and have little of yourself left.

All in all people who have learned helplessness are considered mental health individuals. They have been through 1 or more negative experiences that have triggered a behavior to react in the manner in which they have. It is very hard to overcome.

  1. The first step is becoming aware of the behavior and reaction. Coming from someone who has had learned helplessness late in life this was hard to do, especially since the behavior was due to fear.
  2. Once you are aware of the situation, you have to want to change it. This means knowing you reason for it and having a solid reason at that (one that is positive- usually one that is just for you).
  3. Then you have to make a plan to change it
  4. Then execute that plan
  5. And modify/ re-evaluate if needed
  6. smile because you made a change you can be proud of

 

 

Learned Helplessness

Learned helplessness is when people feel helpless to avoid negative situations because previous experience has shown them that they do not have control. In this lesson, we’ll explore some of the causes and effects of learned helplessness.

Seligman’s Learned Helplessness Theory

In 1965, Martin Seligman and his colleagues were doing research on classical conditioning, or the process by which an animal or human associates one thing with another. In the case of Seligman’s experiment, he would ring a bell and then give a light shock to a dog. After a number of times, the dog reacted to the shock even before it happened: as soon as the dog heard the bell, he reacted as though he’d already been shocked.

But, then something unexpected happened. Seligman put each dog into a large crate that was divided down the middle with a low fence. The dog could see and jump over the fence if necessary. The floor on one side of the fence was electrified, but not on the other side of the fence. Seligman put the dog on the electrified side and administered a light shock. He expected the dog to jump to the non-shocking side of the fence.

Instead, the dogs lay down. It was as though they’d learned from the first part of the experiment that there was nothing they could do to avoid the shocks, so they gave up in the second part of the experiment.

Dogs who had previously been shocked did not try to escape the shocks in a subsequent experiment.
Learned Helplessness

Seligman described their condition as learned helplessness, or not trying to get out of a negative situation because the past has taught you that you are helpless.

After the dogs didn’t jump the fence to escape the shock, Seligman tried the second part of his experiment on dogs that had not been through the classical conditioning part of the experiment. The dogs that had not been previously exposed to shocks quickly jumped over the fence to escape the shocks. This told Seligman that the dogs who lay down and acted helpless had actually learned that helplessness from the first part of his experiment.

http://study.com/academy/lesson/how-seligmans-learned-helplessness-theory-applies-to-human-depression-and-stress.html