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!
Wow 2 years in a blink of an eye! So much happens in 2 years but one thing remains CHANGE and ADVENTURE! Bet you thought I was going to say love, well that should be a given so with that said I must keep shaking things up! I still dream of that delicious cake often and coming from someone who loves pie that speaks volumes!
So we have made it to this point before and I will say though I feel puny, I have faith that after next week I will feel better again. I am now 6 week without treatment. However, each time I get to the week before and the week of my menstrual cycle my MG flares up like no one’s business and I almost break down and want treatment. But I know right now I am fighting for my chance to prove I am strong enough to make 12 weeks without treatment. If I can get even 10 weeks. I know that I can make it and that means that we can begin a tapering of medication and working towards to trying to have a baby. Though we may only be able to have 1 naturally I will try at least once. If I have to adopt the rest so be it. I don’t mind doing that since I have so much love to give and there are so many children that need a good home.
If we cannot have one naturally, then at least we tried and I will still try to adopt because again too many children need a good home. We got this!
Well I use to say my best feature was my smile but I have to honestly say I hide it now because of the MG and what I call the ogre smile since it doesn’t look the same to me. My cheeks have gotten so big from the steroids my smile looks foreign to me. Though it doesn’t make me smile any less I just find that I am not as in love with it as I once was. I found myself really having to think this morning about my best feature since all my best features have changed so much due to this illness. Then I said uh DERH no they haven’t my best feature is still my personality naturally, BWAHAHAHA. I love that I am witty, silly, and unpredictable. I love who I am and I pretty comfortable with me. I am an basically an open book and feel like I rather enjoy life as it comes daily and try to find something positive about each day. It’s part of my meditative habit. Obviously most days there are MANY positive things but some days when it feels like the worst of the worst, I have to think long and hard for that one really good shining star of a moment and focus on that ball of light to finish my day. So yeah, I love my personality and I thank God, my family and those whom I have encountered over the years for helping me shape this lovely ME!
Yep I woke up feeling like GOD DID IT! He made me feel so blessed to feel like I don’t have a disorder. Yea I may have a cold, yea I may be sleepy cus I had to get up at 4am for work, and yea it’s been gloomy for 2 weeks with NOOOOO sun and raining for 7 days straight, but I woke up this morning and got in my car and started smiling suddenly. I walked into work and literally started singing a song I made up about feeling blessed and glad to be alive and thankful to not feel as if I am reminded every second of everyday that I have Myasthenia Gravis. I can LIVE and not just be alive. It is a wonderful feeling. I just was wiggling while I was walking and couldn’t contain myself. I started dippin and shakin and boppin with each step and it was just funny and sweet and I felt so GREAT! I felt Wonderfully Amazing and Amazingly Wonderful! I hope this a precursor for more to come but even if it’s not to have that feeling for even a few moments is a relief! I will take it and be glad to be able to Thank God for that moment. I love to be able to thank Him for each moment I get IN those moments as they happen. It was something I learned to do in college when I was growing in my faith! I learned not to be embarrassed of who or where I was and to thank Him right then and there, and it didn’t have to be elaborate but to make sure I did so!
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!
So today I am suppose to share something I like about myself. I like that I am still so resilient! Some people call it being strong but I say that I am not strong. I break down, I cry, I am afraid at times but I am always able to bounce back and put on a brave face and keep pushing forward and try again. I am able to tough it out. I am able to move past things and be the bigger person even when I really want to get down and dirty and raw and pull out the big guns and rock someone to their core…I have learned I can better do this by being resilient because my kindness and happiness will probably bother them more because they will see that they were not able to phase me. At least that was what they are outwardly seeing, even if I am inwardly seething! It’s all about perception and keeping your composure. I pray and meditate to do this! God shows us how to stay resilient and rewards us for it! He gives us these trials and tribulations to see if we are worthy for the blessings that we are already destined to receive should we pass the test.
One thing that is just for me- I’m not sure what this means so I feel it is definitely open to my own interpretation. I feel that one thing that is just for me is my meditation time. I would like to say it’s morning but my husband tends to fuddle that at times, lol. But my meditation time is my positive self talk time that I think about my day, prioritize how thinks are going to go and then I pray and give myself that positive pick me up for my day! I do not share that time with anyone else and I do not allow anyone else in that moment. I pray with my husband at meal times and if he wants to pray but that time is my time with the Lord. You can have family time with the Lord, but you still still individual time too. I share EVERYTHING else with this man, LOL. Whew that was hard to find something I didn’t share with him…I may be too giving, lol.
I feel like I am in an old school capcom game like street fight when it comes to MG sometimes. I love to talk and it reminds me that my throat, tongue, and lips are made of tissue and muscles. My illness being a neuromuscular illness these areas are affected. In fact for me these areas are affected FIRST. I am a VERY talkative person and so when you give me a disorder that can limit me or cause me to shy away from that, well you have definitely put me down…(for a bit). This has definitely helped reduce my anginophobia as well.
I start to slur and have trouble swallowing and have to sit and rest my mouth for a bit on my weaker days. But luckily I have not had to much of that in the last 2-3 months. This is a first since getting the disorder.Though with stress if I get upset enough in a day I can actually cause slurring and some tightness in my throat after relaxing for a 30 minutes it goes away. Whereas in the past I would be stuck like this for a a day or more or until I took my next does of medication. Sometimes if I was really weak I would be stuck like this for several days and know it was time to call the doctor and ask for a treatment before I needed to be hospitalized. Right now those treatments have gone from every 3 weeks, to 4 weeks, 6 weeks, to now we are trying every 8 weeks. Our goal is 12 weeks minimum.
I have faith this can happen!