advocacy

Testing of all sorts

Posted on by Lady CAS

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- http://www.netwellness.org/healthtopics/gravis/box2.cfm

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.

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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.

And It Begins…

Posted on by Lady CAS

I have officially decided to begin therapy again. My anxiety level has finally hit the roof and I can no longer control it. I feel like if I do not go back to therapy I will seriously do something that I may or may not regret…I’m not sure yet. Regardless, by going to therapy I can at least talk it through and feel better, have another psychologist in my head besides myself and stop going back and forth in my head. That cannot be good (the internal struggle is getting pretty loud).

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I will say that the last time I was actively and consistently in therapy was high school (sophmore year). It was mandated by my parents because they could not fathom the things going on in my anxiety riddled head. I allowed a rather ‘genius’ kid to talk me into things I was not ready for because I was both in love and tired of the subject and a series of unfortunate events happened to say the VERY LEAST.

I went to therapy in college as well to be let out of my college dorm contract due to my anxiety and the constant roommate changes every semester due to roommates’ inability to pay, getting kicked out of school (addiction), and so on each semester for 5 semesters. It was sad and they kept waking me and keeping me up and since I was also diagnosed with insomnia I was let out of the contract as soon as they let me see the university’s psychologist and they were able to pull my high school records.

I also went to therapy from about 2nd grade to 8th grade due to social work to see how I was coping living with my aunt and uncle and changing environments with my real mother. It was interesting. I was never really sure what to tell them, but I hated re-telling my story with each new therapist since apparently as I got older realized they in school and doing their residency and so on. So I clammed up and eventually the ‘people’ went away because I was all better, LOL. I did not like it back then because I was pulled out of class or school every week at the same time and kids always wanted to know where I went and why. It was embarrassing. My brother and I became really good at manipulating the therapist back then…A really bad habit, to make them think everything was fine. Or evading questions.

However, now I have no desire to do this. I want them to guide me and I want to work on me. I have to know where this truly coming from. I believe I know for the most part, but I need a strong grasp on it. I need the triggers to ‘dissolve’ and I need my husband to come into the sessions and be guided on the behavior modification process as well. I cannot do this alone especially when I’m sure between this among other things it is wearing on US. Luckily our insurance covers this and so I believe this is all lining up the way it is suppose to. So here we go. That poor therapist…she will need a therapist after me…but then again 85% of psychologists need a psychologists so I am in good company…

HOPE: Power or Danger

Posted on by Lady CAS

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I have learned in my life that HOPE can be one of the most powerful things in this world. When you give someone HOPE you have truly given them the seed of something that can be wonderfully amazing or horribly tragic.

When you give someone HOPE that needs it in a time of tragedy then it can be the most healing and amazing thing ever. It can help them overcome most anything and they can excel and use this power to put all their energy, pain, and efforts into positive and prolific movements. They can create unique establishments that resolve issues that have never been solved because they have been moved by HOPE. They can take on projects that will one day become the next telephone, cure for hepatitis, heart surgery, and so on because they cannot stand to see one more person say it cannot be done or watch one more person die.

However, HOPE can have the opposite and most dangerous effect for people who are not worthy. In domestic and abusive relationships the spouse who is not hopeful will watch and the hopeful one is the one who is abusive. They know you will not leave and they get more emboldened by this because each time you stay after the first initial encounters you prove that they have the upper hand. If they do it one time they are likely to continue because without help (professional help) they cannot control themselves. The are left unchecked and they realize you are not going anywhere. They know you will allow them to disrespect you. You will allow them to say whatever, whenever, and do whatever because at the end of the day all your threats are empty. You will not go anywhere, you will not do anything. Even if you do time and time again you just take them back. They have HOPE. You gave it to them without even knowing it; by your actions. They saw the trend. So they get comfortable and until you finally break it and it does not happen anymore they will not believe you.

Remember, abuse happens any many forms, physically, mentally, emotionally, and verbally to name a few. When someone understands that you have truly had enough, they will start to waver in their HOPE, but only when you break the cycle. Prove you mean business, get a circle of protection and help. Show them you are not going to stand for it. I know this is easier said than done especially if you have let it happen for so long. I know that there was a human person in there you loved at one point and some of you may want to salvage the relationship. So this will take time if you choose to, but that requires outside help because obviously you were/ are not able to do it alone. So get that help, getting help offers you HOPE. That gives you power and diminishes theirs over you. We all deserve to have control in our lives and when you feel  you have none at all, this is a horrible feeling. When you lose the ability to feel creative, ambitious, and compassionate, you need to regain your HOPE!

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Migraines. The silencer.

Posted on by Lady CAS

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Many people who have never experienced a full blown migraine say one of two things, they surely cannot be that bad… or are they really that bad? People who have dealt with people or lived with those who have had them realize that after having so many of them the pain must be real the symptoms must be real and that after doing the research and seeing others like them in the doctor’s offices and hospitals, it is more serious than they may have ever suspected. In some cases it can mean more serious underlying issues.

In my case, I have a family history of migraines. I did not know this growing up. I had a fairly normal neurological history I felt until middle school. I started experiencing head aches that became more frequent. My mom would give me extra strength tylenol. I would easily recover. Sometimes it was simply that I was hungry or tired from all the things I was doing and that would solve the issue. However, when I got older and got to high school I began having ‘optical migraines’ where my vision would become fuzzy and it only affected my eyes. It sucked. Those became more and more frequent. I had glasses and contacts but taking them off/ out did not help. Nothing really did. I just had to ride it out.

Then they began…MIGRAINES. I cannot say I remember the first one exactly, but I can say that I remember thinking it was a headache but much worse and telling my mom that the light hurt and it hurt when I moved. She said I had a migraine. And I said what it that. After that I never really had to ask ever again…I fluctuated between headaches and migraines for about 6 months. I always knew when I had one. I do not get regular headaches anymore and I do not know why.

When I get a migraine it is always on one side of my head (right or left) and I am light, sound, and motion sensitive. It will not go away without medicinal intervention and they use to stay the same strength without waning until for many days. Now it will undulate but still will not go away until I take medication and still hang around for days. I suspect the reason it undulates is because of both my MG and because I take an aspirin every morning in addition to my migraine preventor each day; which is different that what I use to do a for the last 15 years.

My longest migraine was 60 days. but most of my migraines last 3-5 days and come 1 to 2 times a month. However, since starting my migraine preventor 3 years ago it has been 1 time a month for about 1-3 days. And the migraines are now at about 80% strength instead of 100% strength.

Yes, I want to miss work, and stay in my bed in a dark room and never move again but I can’t. When I was in undergrad I did this. I was absolutely crippled by my migraines. I could only afford to take imitrex (which I am now allergic to) once the migraine hit and nothing else worked at the time. I hated it because I had to take the nasal inhaler and it would drain down my throat and tasted horrible. But it was that or be crippled and possibly end up in the hospital again. That happened once while at school. I ended up having ‘cephalgia’ as the diagnosis but in addition I am pretty sure I also had a panic attack as they had to put me on 2.0 ml of oxygen because I could not breathe since I was in so much pain and could hardly see, was vomiting from the dizziness, and every time someone spoke it was like an anvil struck me in the back of the head. My blood pressure was 160/90 when they took it. Normally my bp is 106/60 so that freaked me out even more.

I was crying and my parents were at home in bed while I was in the hospital at school. I was scared. I just wanted to go to sleep and have the pain go away. It was not a good night. Those of you who have never experienced a migraine I urge you not to take your friends and family member’s condition lightly…this is a neurological condition that can mean so many things. Have them go to the doctor if they have not been to be sure it is not something more serious. However, even if it is not…A MIGRAINE is STILL SERIOUS! People are very fragile in this condition even if they power through like me. They are doing everything in their power to have a normal day while in excruciating pain that physically affects them and causes high blood pressure, fast heart rates, irregular breathing, and so on. That person is giving you all they have that day and it should not be taken lightly.

Mentally and emotionally they are giving everything they have as well as it takes great concentration and effort to do everything that day. they have to work twice as hard to remember things and focus. More energy is exerted on every task. So please be considerate. I’m not asking you to go easy per se but just be mindful of what it takes for them to be there and do all they do when they could have easily called out and left you in the lurch that day. That means they think more of you, their co-workers, and the company to push on despite how they feel. At least that is how I feel! Now I will take me and my migraine into my office and get on my conference call with my director now. Have a great day guys!

Warm Fuzzies: True Altruism

Posted on by Lady CAS

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Have you ever just felt the need to help other because you need the warm fuzzy feeling it gives you? I love that feeling! I love helping others because I enjoy knowing that I have done something that will give them hope and positive interactions and maybe prevent them from making ad choices in life. I hope they will  pay  if forward and help someone else and in some way and let them know that this world is not full of hate and evil.

Everyone is not out to get recognition or the tangible. I am altruistic. I do not need anyone else to know what I did as long as I know what I did. To know that I helped someone else and that they will live a better life because they have hope, peace of mind, and love in it from something that I did makes me happy.

If you are truly altruistic you do good deeds often without even thinking about it and people may or may not thank you often. Moreover, you are not even looking for a thank you. You just do it because it is right. You enjoy doing what it right. It does feel amazing though to be blind-sided by a story of someone telling you of a time you were good unknowingly to them and how it made their whole day on their worse day ever and changed their life. Moments like those just brighten your whole day. It truly does make it worth while and those may be the exceptions and not the rule to why you should be altruistic it should never diminish making an effort. Don’t be the Egoist!

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Interrogated, Dosed, Posed, & Prodded

Posted on by Lady CAS

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So yesterday, what I had planned to be a day to try and rest a bit from what I hoped was a common cold, but new deep down was not, ended up being everything but restful. I mean from the mental strain and the physical strain. By the end of the day I felt like I should have stayed at work all day, yet I would not have accomplished anything on the front of my health so at least I am enlightened on that matter.

So I had taken a half day as I stated on Monday yesterday to relax a bit and run a few errands. I was going to go to my other job and pick  up an item and maybe run by the grocery store and try to slowly clean my house if I felt up to it. But if I did not feel up to it with this cold I was just going to rest because I knew I had not bounced back from this last cold nearly as well as I usually do.

Monday night I started thinking, maybe I should go to the minute clinic. So, when I got off I saw that they would be at lunch and so I went and grabbed some lunch too and then went to minute clinic. After I got there it was a pretty quick eval. I was praying that she did not tell me I had pneumonia. I was asked a million questions it seemed that I felt I had already answered on the kiosk form and that should have already been in epic that she said she could see but I kept answering anyway. My prayers were answered. But she also would not say much more…she sent me to the urgent care for x-rays and further treatment. I was a bit nervous now. She said my left lung did not sound happy. It was definitely wheezing.

I knew I was hearing it in between coughs and I was unsure if I should use my inhaler as I had not been told to use it since this was not allergy season…I usually have bronchitis (inflammation in this area) during this time and require my inhaler 1-3 times a year. So very rare. I get to the urgent care. They ask me all the same questions as the minute clinic refuse to look at my sheet from which I was referred over with and  never even look in the epic system making repeat everything all over again. Not happy with the interrogation system here. I mean really. They tell me later save myself a time and bill and just come straight to them first because they (minute clinic) never do anything only refer everyone there and we never look at the sheet they give you. I noted this. I also noted that as of yet minute clinic did not give me a bill at had covered all my charges thus far unless I managed to get one in the mail later and they had cost me $175 since I had not reached my deductible yet… When I get to the back they give me the x-rays and in the mean time begin a breathing treatment of albuterol (the same inhaler treatment I already have) on me. You have to love x-rays where they make you stand in awkward positions and hold them and hold your breath and place your hands here and pose this way and shift that way. I felt like a friggin model. ANYWAYS, In hindsight I should have started using my inhaler as soon as I started that cold/ wheezing and he said as much. Now I am told that I need to use my inhaler every 4-6 hours and that I have to take an antibiotic everyday for 5 days that happens to also be a contraindicator for people with MG but it’s benefits outweigh the bad right now. Plus I have been on it before while having MG.

At this point my 1/2 day of rest is annihilated as it is now 4:30 in the afternoon and I have to drive to pick up the prescription. I get home at 5:15p and think I would have gotten home around this time anyway. That almost felt like a waste and I do not feel rested, LOL. Then I start reading the prescription warnings further and start laughing. They are always good for that. The label says that I should not take with calcium enriched foods…okay normal, do not take with antacids within 2 hours blah blah blah…then it gets interesting when it says it does not treat things such as the common cold (which is viral… I get that) but it treats ANTHRAX. Dear GOD, what have I got going on, LOL. They never tell me what my diagnosis is…I had to read it on my discharge paper later as I was leaving…I thought when he was saying I will call you with your x-ray results that he was saying I will tell you what your results are, LOL. He only meant he would be clarifying would be getting a second opinion my lungs from the doctor as he was the PA that they were in fact clear ok. Just had some drainage in them. So yes, final diagnosis was Respiratory Infection.

Then as if that is not enough it causes addition muscle weakness and breathing issues for MGers so I was a bit more tired than usual after taking it last night which was fun. Which only made me more annoyed as I listened to construction work suddenly blaring at 8:30 at night lasting til at least 11 when I fell asleep. I was really annoyed by this. This was not road work either this was construction on a new hotel bed and break expensive type inn that HAD a deadline of November 2015 so now that they have fully missed that what made last night so durn important to dose and shovel and bang away until the late night? Then they were up bright early before 8a again today. DO they not realize people actually live on this street since it’s all businesses except for the few houses and apartments over the art galleries, or do they just not care. I mean that’s pretty reckless considering that some of the ones who own the businesses live in these houses and would be recommending people to stay in that place or NOT.

As it is they actually had people who made reservations for that place in November way back in the summer when that place was being thrown up and looking like it was going to be done soon then things slowed way down for some reason and now they are far behind schedule. People were supposed to get married there, they had it splashed all over the local paper. I can only imagine how upset and irritated people were…I would not have reserved a place that was not finished being built for my wedding. Anything can happen and obviously did.

Well now after my day yesterday I have decided that I will take off from hard labor and just do paperwork. I will stay in my office for the rest of the week, do consultations and then I have Friday off. I will have to get through this and rest. I am pooped!

357/365 – Trial for myasthenia vaccine launches

Posted on by Lady CAS

This is amazing! I am glad this blog was seen and hope that this continues to gain speed!

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At the end of December I received a press release from Curavac. The company representative said he had come across my blog on the vaccine and wanted to provide an update on its progress.

The Myasterix consortium launched the first phase of the clinical trial at the end of December. The firm said it ‘study will evaluate the safety, immunogenicity, and also explore the efficacy of a therapeutic vaccine candidate (coded CV-MG01) with designated orphan drug status in the USA and Europe by the FDA and the EMA. CV-MG01 comprises two synthetic complementary peptides conjugated to a carrier protein’.

It will be randomised, double-blind, placebo-controlled and includes a dose escalation. The study will be carried out on 32 MG patients and comprises 2 parts. These are: an active part that lasts 5 months and an observational part that lasts 2 years to assess long-term treatment effects.

Dr. Stephane Huberty, Managing…

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Silent Screams

Posted on by Lady CAS

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I see you out of the side of my eye stumbling, crying

You are ragged, drenched in sweat

Reaching for anyone

I saw you running in the shadows, hiding

Why are you hiding?

Don’t be afraid

They walk past you

They step on you

They step over you

The welts on your skin, the agony on your face, your bones sagging deep in your leather-worn skin

Stand!

They almost notice you

 

They shake the buzz out of their ears

They keep moving

but me…

I HEAR YOU!

 

**I wrote this poem when thinking of the many people who are seen to be invisible in this world! The mentally disabled, the homeless, the incarcerated, the abused, and discriminated, and the list goes on…Will you hear them? Will you be an advocate and help them? How will you change the world for the better for them? Many times they just want to be heard they just need a friend. Can you offer that much; your time!?!

Misdirected Frustration

Posted on by Lady CAS

I have realized that there are times that we as people do not mean to be frustrated and that we do not even realize we are frustrated or have an attitude until it is far too late. And even then we are so committed to the moment that we will state that we do not when confronted because we are genuinely hurt or possibly embarrassed and our pride has been knocked down a few notches.

Many times when I get frustrated it is because I cannot help someone that I truly desire to help. An example would be my mom. She and I are quite close. My mom calls me often. However, some of her calls are about technology. I sometimes dread these calls because I am a kinesthetic learner/ person. Let’s be clear I do not dread them because of her, ONLY because I have a hard time visualizing the problem sometimes because I most of the time I need to physically see the issue and play with it on my own by putting my hands on it and doing it myself. So when my mom calls me and she needs something right at that moment and I cannot help her it tends to frustrate us both when I cannot and both of us have our tempers flare a bit. Mine because she cannot always understand what I feel is ‘simple’ enough for her to get and hers because what I am telling her does not make sense or is not solving her problem.

Many times these sort of issues do not escalate much farther and we sweep it under the rug. But as I was driving home later that day I thought about the incident. I thought and thought and realized no matter how irritated I was about it, it was because I could not help her. It was not because she called me at work, or because she had become frustrated with me, it was because I could not help her and that I had become frustrated right back. I wanted to immediately call and apologize. Then I realized I never do apologize after these circumstances, WE never do. It’s like an unspoken thing because, well we just don’t. I guess we could but we understand that it was not serious and that it was not worth it. We always sort of call each other the next day and talk about something else and move past it. We never hold a grudge over it and nothing ever fester from it which I am always grateful because I could not live knowing I hurt my mother and she was just holding on to it silently. No, that would just not do! My mom is a strong woman who is also very sensitive and I would never want to jeopardize that relationship.

As I thought deeper into how this situation went though I realized this could permeate across other relationships. Was this also happening with my husband? Did this sometimes happen between my parents? Were they away? Are my husband and I aware? I felt like my mind was blown! My husband and I had a long sit down! We had some talking to do. It started with him remembering that I have anxiety and that frustration means slow down and try to express things calmly which can be hard when you have anxiety and to work with me, lol. It’s still hard saying that I have GAD or generalized anxiety disorder and have since I was 16 but I have always felt I have had a good grip on it until I don’t. I seem pretty normal until I’m not. Until he thinks I’m crazy…So I remind him of his ‘safe’ zone words he may well want to stay away from and the fact that I am indeed not crazy just frustrated because I have anxiety and struggling to express myself properly at the moment and I need time to chill/ decompress. He’s still learning, we can usually laugh later but at the time my anxiety is no laughing matter. I always feel so ‘little’ during my moments. I am just glad between my mother,  husband, and of course God that they make me feel seen and encouraged. I was doing well on my own but with them I am thriving!

Caught in Purgatory

Posted on by Lady CAS

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Have you ever found yourself caught in between two areas and you are not sure how to express which is the right one? You want to belong to aspect of life but you are long for another? You are not really sure which is right yet one seems to constantly cause issues but it makes you happy or feels right to an extent…

I feel this happens often to many of us. We find ourselves caught between how we are raised and how we are developing as adults! How the world and our experiences have shaped us and how we see ourselves or how we want to be.

So some of you may ask what is the problem with any of this? Well the problem comes in when you start having conflicting views. For example, that person you were raised to be is a smart, independent, individual with morals, but the world/ society has allowed you to become a essential, a leader, and key to many things what then?

How do you cope with going back to what will seem like nothingness to you? I have seen many people recently who have retired, been laid off, or changed jobs to a lesser job only to have issues in other aspects of their lives. This is called work/life spillover or negative balance. The individual cannot handle going from being superior, needed, important, and/ or the center of chaos or attention to the doldrums of regular life. This is boredom for them. You will find many of these people finding unhealthy coping mechanisms such as retired people going right back to work and working themselves to death, drinking, drugs, and/or lashing out at others (usually those closest to you).

The same can be said of people who are laid off or down graded on jobs. These people are going to be frustrated. It is hard to explain the connections they feel they no longer have, though they do it is not the same. They do not feel as close to the ‘action’. They feel left out. Many people who retire and are not really ready to retire and have not truly mad a plan for themselves are almost surly and unsettled. They feel the need to be busy at all times or they feel useless. In many cases you will find them doing the exact opposite (lying in the bed in a state of depression) because of this.

They miss being admired by those that worked under them. They have no one to control or boss around so to speak. They try it other environments and it doesn’t really go over well. Sometimes they feel disrespected by the ones they love because they feel they are not showing them the ‘respect’ they ‘deserve’; however, they are desiring them to sit back and be quiet as they are presiding over them as they would an employee instead of coming to them as family or an equal (if a spouse).

The individual tends to lose sight of all the things that have been happening in front of them as they slip further into depression/ anxiety. They tend to begin blaming others for everything bad, not seeing their faults, and believing that the world is affected is affected one way with or without them. (IE you would be nothing without me, or if I died no one would care!)

I personally have seen and dealt with many people who have been laid off, down-graded in jobs, and retired in the past decade. I have had to study several case studies on the matter as well in my psychology classes. I will say this, I do not prefer to deal with my own family because I am too close to the situation even though I know I can deal with it professionally, I am not sure the individuals could see it that way. When people are far enraged it is not always possible. I will say this, if you are family, friends, or otherwise reading this and feel that this expresses anything personal reading this, it is purely coincidental because my topic comes from recent discussions of layoffs at my organization, mass shootings in the news, and the like. However, if you feel this way, look inward and understand that compromise is a part of life. If you feel guilt or alarm, there may be a reason why! You may need to adjust some things! I am prepared to help and counsel anyone who needs it just ask!