HOPE: Power or Danger

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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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I said GOOD DAY!

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Now when I say good day I usually mean it as a joke. Today I meant it as a statement. I felt it was radiating from me like the day rushed up to meet me and said, “hello, how are you?” and in response I was cordial and and said, ” actually I feel pretty good and I’m going to claim this day to be good and so it shall be and it is SO!” I felt like a Queen making a royal proclamation.

I woke up fairly rested. I had a pretty good night the night before. Watched a great movie. Then watched the live NBC version of the WIZ and it was really great. Then I read my book for a while all while cooking my lunch and dinner for today in the crockpot. Then I settled in and went to bed.

So this morning was pretty good. I got up read so more. took my time getting up and made some breakfast. Put my lunch together. Then my dinner as I would be at work for that time as well. Then I read again. I got up got ready for work and still had plenty of time before work. So I prayed a bit. Then I read some more. I felt really good this morning. I got up packed my stuff and prayed as I always do as I leave my house (a short prayer of protection and then added one for my family and friends and their relationships today as I felt especially good).

I got to work early 20 minutes early so I read for 10 minutes. Then I went in. I got my things together. Set up and boss let me soak in my normal 5 minutes of (meditation) and then he hit me with bad news. We have been getting a lot of that lately…I was like HEY…I SAID GOOD DAY. But then the news he gave about the person…it was a blessing in disguise because at least they were strong and fighting! My special person my “sunflower” is in my prayers and I despite my initial shock I know today will be a good day and the sun shines bright with new hope for them. I cannot go deeper than that for now but just know you are not alone! I say GOOD DAY! SO it must be!

Let The Healing Begin…Dropping My Bags

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SO many of you know that I suffer from anxiety. I have most of my life and was not diagnosed until I was 15. This came at a time when I felt like I was drowning in my anxiety. Many teenagers feel like this however. I was finally at a point where I could not always control how I felt. I had outbursts of crying, rage, and just retreated into myself. Most of my friends would not see it but the people I dated saw it often. Heck these poor guys probably thought I was bananas! My poor journal read like a manic harpy and I was constantly thinking of running away or some scenario that would bring the world to remember me as well as some tragic way hand print to leave on my mom. Oh the epic fight of mother and daughter. When I think of it now it seriously makes me laugh so hard I cry! I remember sitting in my room and fuming for hours of how one day I would just curse out real good, LOL. I thought one time secretly of slapping her. But I took it back instantly. If you ever met my mom she is a very VERY thin woman. I feared ever hitting her because I knew I could probably really hurt her or worse and I didn’t want to do that. Just make her mad or make her see my point and back down. Make her see I was right…Though I rarely was back then. The only department I may have been right in was maybe having a bit more attention instead of the negative reinforcing attention my brother got for being bad.

My anxiety seemed to stem from very young. My biological mother (whom I also call mom) is a recovering drug addict. She has been sober for over 9 years and I am the proudest cheerleader for her! However, when I was toddler and she was going through her addiction she did some less than favorable things which included abuse/ neglect by legal terms. The best decision she made while trying to find herself and then eventually becoming sober was hand guardianship over to her aunt and uncle whom I call mom and dad. There may be some anxiety stemming from this however I think that most of it comes from this next bit. My younger brother whom I loved and adored was always with me. I cared for him like my own baby. Though he was only a year younger than me I protected him and cared for him during those rougher years. He loved me too. Then when moved to my aunt and uncles (our ‘new mom and dad’s) house he changed. He was not the loving brother I remembered anymore. He was mean to me. But it was not all of a sudden. At first he still clung to me. I still did everything for him and my parents said let him speak for himself. Let him do this and that for himself. It caused me problems to see him struggle with this. He eventually got it though. I guess I had more problems with it than he did. However, then he began to change. He would taunt me, and call me names…normal brother stuff at first. Then it escalated. He would call me more harsh names behind my parent’s back. He would say things about me that were not true at school and start rumors about me that were horrible. He would tell everyone at school when my menstrual cycle started and tell them when I got in trouble at home and what it was about.

Nothing was off limits to him. He did anything for a laugh and it was always at my expense. It was horrible. He would call me a whore, a slut and the like yet I was a virgin. Guys would come up to me with expectation and wanting to date and dump me after a week because I was not ‘putting out’. Eventually he got bold and started to do these things in front of my parents and they started seeing his behavior get way out of hand. However, at this point things had gotten so bad there was not much they knew to do. They had tried everything at this point but he was nearly a grown man.

My dad always said the boy needed one good butt whooping from some kid and that would fix him. Apparently that never happened or worked it it happened secretly. My brother my brother turning on me as I felt happened was a hurtful and sore spot after all those years. I would try to do things that interested him and he still had no interest. He was only interested in being a BRAT or hoodlum after a point. I could not be that person. I was not a ‘bad’ person or a criminal. I knew the people he hung out with and what they did and I could not do those things. I thought that he wanted to go to college and I even offered he come stay with me in my apartment under the condition that he either go to school or work. It never happened. He graduated school and went to New Jersey. There he did ok for a living with another aunt and got kicked out after starting his usual antics. Then not long after that he got in BIG trouble. I thank God constantly because I was not far from making the same decisions my brother did, but something told me NO. It had to be God but honestly I told myself at the time it was my friends, it was my drive not to be like him for how he hurt me, it was my thirst for education. Little did I know…

Many can see why I have a lot of anxiety. Those closest to you know how to push your buttons and cause you the most grief. He surely did and does. Recently I sent him a letter explaining how though he may call me sensitive among many other words I became an advocate for bipolar people due to him and my biological mother. I want to help people like them. He is considered severely bipolar among other comorbid issues. I also told him that all I ever wanted was to be accepted by him, the one full-blooded brother I had (because I have many other half siblings by my biological father) who went through everything I did and whom I have loved since the day I saw him and cared for him. He is the only one who knows ‘US’. He finally apologized! There was no sarcasm, no cursing, no if, ands, or buts or retaliations. I was almost scared to receive the next letter because I was expecting him to send a response with something mean Like I’m sorry but you it was in the past and you shouldn’t be so sensitive and so on and so forth. I had a whole arsenal ready. Of how he didn’t get to pick what hurt me and what didn’t and so on. But it quickly deflated and melted away when I saw that! All that emotional baggage just started dropping one by one. I just stared blankly at the letter. I was just stuck reading and reading that line. It felt good to finally feel like I could move past that. To feel like after over 20 years of a battle nearly 30 years of a relationship could feel like it was finally beginning to HEAL!

SMILE: Your Silver Lining

There are many days that I feel worn down and the only thing I want to do is sleep or hide. But I will say that smiling and pretending to be normal gets me through the day. Though some people may say this is called being fake I disagree because at the end of the day I feel better because I have made it through the day, it generally was a good day, and that smile comforted others in some way.

My philosophy is that you should not look like what you have been through. That is the life of a MGer. We basically look normal and for a person on the outside looking in, we look as if we have no disorder at all, unless we go around depressed, complaining, or acknowledging the physical scars we may have incurred from any surgeries we may have had. I encourage and challenge you to keep the mindset of smiling no matter what. I do it in when I am in the hospital, at home, and work and it is amazing the positive looks and comments I get. I do not do it for that reason, it is something I have always done but when I was at my lowest point in life I had to relearn it some years back.

If you are new to this method start by trying to find the positive in every situation…I know that sounds CRAZY and hard to do. In everything bad that happens or that really bothers you or gets you down find the positive. If you do not get that job, think that there must be a better one coming that better fits your needs (though at that time it may not seem like it). Sometimes this may not be possible at that time because we are human and we are emotional. But when we calm down we realize that positive things did happen we we just do not say anything and think on it. Many times I just say nothing and realize that things come together at some point. It may not always be immediate but they do come together. I didn’t get that job, but then I hear the company was in the news for something horrible, or I was late to work and there was a car accident right where I was supposed to be had I been on time, or I was sick for a week and used my vacation in the hospital but at least I had it to use and my boss is understanding and flexible.

Sometimes my smile comes from thinking of what I have left to look forward to, my family, husband, the future, my vacations, my games, my reading, my blogging, life, and so on. I Thank God for all of that. That makes me smile often too.

SO smile life is not that bad when you can still smile! You can inspire others and comfort many more!

Pregnancy and MG

Pregnancy

So there is not a lot of information on pregnancy and Myasthenia and many doctors almost try to talk you out of it. I have had had one doctor that was so rude she even went as far as to say, “why would you want to have kids?” Needless to say I reported her. It is a very sore spot for me as I was diagnosed wit Mg 2 weeks before my wedding and have always wanted children. So when I was told that it may not be possible and then that I may have to wait 2 years or that it could kill me and so on, I was very confused and upset. I am constantly asked when I say that my symptoms are exacerbated around my menstrual cycle they ask if I want MORE kids (insinuating a procedure to end them and help reduce my issues). I’m always like MORE kids…I don’t even have one yet lets be a bit more sensitive please and at least ask if I have any first. Doctors are so desensitized nowadays.

After doing a lot of research and speaking with many doctors I found that people with MG can and do have babies. There are several concerns to deal with though.

  1. What medication you are on: cell cept for instance causes severe birth defects and you even have to sign a  waiver stating you will use several types of birth control while on it and not try to get pregnant while on it. Other medications come with similar warnings.
  2. Plasmapheresis: You have to be able to go 1 trimester without this treatment as it can act like an ‘abortion’ in the first trimester . You want to go as long as possible without this treatment but if you need it in the 2nd and 3rd trimester it is possible.
  3. If you are just diagnosed with MG you want to wait to try to conceive for at least 2 years b/c of respiratory failure
  4. You are not likely going to get to have a natural birth if you wanted one because it is too stressful on the body and the repetitive fatiguing issue of the muscles pushing so we must have a c-section.
  5. Certain medications will require you to taper down on them or come off them completely during pregnancy; however, this is up to your doctor.
  6. Another this is that the baby could have MG for a short period while in the womb and have little movement which is likely to wear of they say shortly after birth. Moreover, some are also born with MG and have it for about 2 months and this is also likely to wear of about 2 months after birth.
  7. We MGers are also likely to be more fatigued during pregnancy than normal pregnant people and our symptoms may be exacerbated; however, some people have said that their MG seems to “go away’ while pregnant, everyone is different so, I’m hoping to be the latter.

I still have plans to have a baby and we are getting closer each day. We have had some obstacles adjusting medications and with some crisis issues but we are finally getting to some stability and all my doctors are starting to finally focus on it. It feels like a breath of fresh air. Even if we find that we cannot physically have one…if it becomes to demanding on my body, we will adopt. We have too much love to give!