I cannot believe it has been a week since I have blogged! This is so unlike me. I mean it is like me going a day without talking! It just so rarely happens you would think that I am sick. The reality is that I have been so busy that I have hardly had time to wrap my head around all the strange feelings and activities that I have been undergoing.
Let’s first talk about these activities. I have been visiting friends and family like it is going out of style in an effort to seemingly catch up on all the years I have missed from being away in college or busy with my masters for so many years. I also am trying to catch up from being ill and unable to visit and hang with people as my reason was I was in the hospital or to weak to actually be away from home or treatment more than about 1-2 hours if that.
Now that I can I have been booked or booking so much time with family and friends that I have turned ‘fun’ into another job form myself and have to slow down a bit. I feel like my bed and I need a real come to Jesus moment where we talk about some secret things that no one else understands. I mean it seems like it has been awhile since I have held the sandman hostage; which is a requirement when you have work shift disorder for over 15 years.
I have been kayaking, hanging in arcades (Dave and Busters), out drinking, playing pool, at food truck rodeos, and so much more. It has been fun but I have to make sure I don’t overdo things by spreading myself too thin in the name of fun.
Now for the crazy feelings, well I assume they are a mix of stress and just a bevy of emotion that keeps flooding me thinking about my future and reflecting on my past with MG. I mean to think I am almost at 15 weeks with no treatment is amazing and the longest I have gone ever. Then to think that when I first started with MG that I could barely hold or balance things in one hand and now I can hold them with a finger or two and I am almost back to my old strength even if not my old endurance yet as I have to build that back up. I also think about the fact that no matter where my husband and I are now in our relationship he was very supportive of me through some rough times that most people did not see or even know about. He may joke with me about it now but he was there and helped me get through it when I could only had him and my mom to share those really personal things with. I was even too embarrassed to tell my best friends back then. I am so happy for the stability and the success that has occurred in my life. I thank God daily and several times a day for all that is occurring in my life. People need to know that I may not be the most religious person but I am spiritual, grateful, and I love God even though I do not blog about Him all the time. I’m not here to sell you my God! He is yours if you want him and I feel if you like what I have and what I do you will seek him the same as I did because you see him working in my life as I saw him working in the lives of those who were happy around me!
Sometimes I even feel sad because I feel as though I am still not where I want to be, but I realize that I will get there in due time. I am progressing and that is all that matters. I know that I have put on weight again but I am healthy and stable and now since I can workout again I can get that weight back off. So that makes me happy and working out lately has been a great joy. My WOD (workout of the day) is going to be awesome today! I can’t hardly wait to get home and conquer it, who knows I may even let my husband do the workout with me if he doesn’t get in the way. I’m kind of selfish with my workouts, LMBO. I like to workout on my own then I will teach people whatever, they want on their own time (since he doesn’t already know the moves).
Sometimes I just sit and ponder…okay all the time, LOL. I daydream like it’s my job and one day I hope it will be. I hope I can completely convert to writing and people paying me to read about my craziness. Not here of course because I always want my blog to be free. I want people to always have some area where they can ‘easily’ access my thoughts.
Anyways, I sit and ponder aging. Sometimes it scares me to think I am aging and have yet to accomplish the things I want to in life. But then I think about all the famous and not so famous people who were well into life, well into their 30s, 40s, 50s and so on before they accomplished the fame that we know them for today. I also think about the lifespan that we have today compared to decades and centuries ago. Though no one is promised tomorrow or even the next second, I have time create these things as long as I am working toward them and not procrastinating upon them.
My great grandfather is 92 years old and acts and moves much like a 20 year old. My great aunt is in her late 60s and NOT one of my friends believes me when I say it. They looked at her picture from this weekend from a commencement ceremony for a reunion and they said she looks like she is in her late 30s or mid 40s at best. When I tell her this she laughs and says they are too kind but they are your friends, they have to say that…She has no idea…my friends can be harsh and very honest, LOL. They have properly aged many in my family and even over aged a few.
A lot of it has to do with the confidence one has too though. It is exuded in the way we walk, talk, and act daily. I learned that when my confidence is highest I could be in the worst outfit imaginable to me and yet no one notices because I feel like a million bucks and I’m happy and my skin glows and I walk like it’s a new trending outfit despite the despair of the outfit sometimes, LOL.
Sometimes a new outfit can do this, a new hairdo, or glasses, but for me I have learned that just owning your age but not looking is the new confidence. By learning to own a less stressful lifestyle and enjoying life I can have this! I want to be like the many examples I see in my family. My family and friends keep me young and I am learning to let go of my fear when it comes to aging!
I take great joy and care in planning. I have no idea why it makes me feel so good but if someone hands me the task of planning I feel like I am on cloud nine. I could wrap myself in the computer, my notebook, and phone get all the planning done. I mean I sit there for hours before I realize that I have literally spent an entire 5-8 hours in front of the computer pouring over choices and plans.
I do not feel stressed just simply determined to find the best deal possible and the best location. I always liked planning because I like knowing when and where things will happen and being in charge. But more than that I enjoy a sense of accomplishment. Something that always stuck with me that my mom taught me when I was younger was to take initiative. She used to get so annoyed when I would wait until she told me to do something or I would sit and let things ‘happen’ in the house. Or would just follow her around waiting for her to give me a task. LOL.
She would say you need to learn how to take initiative. She said do you know what that means, it means taking on a task/job/ chore before someone can ask you. Being preemptive. I gave her a perplexed look. She had to define preemptive too. I was like 8, lol. I was excited. Immediately I started looking for things to do that she would normally ask me to do and try to do them before she could ask. This of course went to everything, but was short lived because as a child you do not always like doing chores. However, I did learn how to do this with school work, some chores, and some activities as I was in so many school activities I had no choice.
When it is time to go on vacation I go in to a zone like no other. I become so focused. I have certain websites I go to knowing they will give the best deals. I also know which days to try to go on vacation and I try to find additional discounts while on vacation from my favorite sites like groupon, citipass, and living social.
Then planning for my wedding was a dream, well until I the last few weeks, then I turned it over to another professional for the last minute details to help bring it home after I worked pretty hard for 9 months of planning.
Now it looks like if this travel agent doesn’t get it together for our trip to Europe I may get another crack at it.I had already been perusing things last fall after I was first told about the trip and found some promising things…However, it’s not my show to take over…YET LMBO. I will stay in my lane for now.
I am so excited today! I won’t say everything is going my way but I will say that today is definitely an amazing day! I’m reaching goals and working toward new goals everyday.Moreover, as I reach old goals I make new ones and push toward those. Right now I just hit 12 weeks without plasma exchange treatment for myasthenia gravis again and that is my second time doing that but this time I do not feel like last time. I do not feel like I need treatment right now. Last time at this point I wanted treatment 2 weeks before this but I was just hanging on. Right now I feel like I can go another 2-4 weeks no problem. So I will. If I feel like I can go further I will, but make no mistake, I will not sacrifice NUMBERS for my health.
My next goal was to get in more exercise and I am doing this daily. I started walking more, bought a spin bike, and a fit bit. I am all over this challenge. I even started tracking my food again. Not really eating as a DIET because I still eat what I want just making sure that I do not put more in than I expend and that I get enough for what I am doing. You have to eat calories to burn them. I tend to be in starvation mode quite often, especially because I skip breakfast A LOT.
My final goals are making sure that I continue to keep my bucket list STRONG! I am still working on checking things off that list. I have travel dates set for going to Europe and I am almost to my 50 book reading goal for the year and I will be checking off a few more things as well. I am totally psyched!
Annual Bucket List: 2016
Do a local bike race- spin bike is getting me ready
get yoga mat/basic training
Visit wizarding world of Harry Potter- I will do this in London
Read 50 books — at 43 books almost done but I won’t stop there
Buy a Go Pro
Go Sky Diving
Go to a State I have not been to before
Go to 5th Cirque Du Soliel Performance- have to go out of state thanks to HB2 chaos
Throw Pottery (as in make my on pottery)
Decorate my house for fall
Decorate my house for Christmas
Take a romantic trip with my husband
Volunteer with a charity monthly
Take a culinary class
Go swimming (you would be amazed that since being diagnosed with MG I have not swam once because I have started to have fear that it would become over exterted and not be able to get out of the water….says the former lifeguard and scuba certified person)
Be sling shot (it a weird bungee course thing that looks like a giant sling shot)
Go to Canada
Master Bucket List
Write a book- In the process
Have a baby/ adopt a child
Create a Charity
Run a business
Travel overseas like a nomad (England, France, Italy, etc)- Scheduled for Sept.2016
Go to Disneyland
Go to a bioluminscent bay
Have my music music produced and perform it
Help Find a Cure for MG
Go to Alaska- see the Northern Lights
Pose for a sexy calendar
I’m proud to say that my parents have no problem saying who their kids are! Some parents would shrink from their responsibilities as parents when they find they have to bend and blend with biological parents and children who have mental disorders. Then to top it all off add some drug addiction, criminal charges, and grand mistakes and behalf of all parties except the adopted parents and I can’t even understand how they did not crumble and run away screaming. Yet, every time someone asks how many kids they have, they always say 4 proudly.
Yes, one is in prison and by a mistake of his own. They have learned not to blame themselves finally. They have learned that he had decisions to make on his own. God gave him options to make as well. He was afforded all the same opportunities as the rest of us and they took special care with him as they did with me as he and I were not their birth children but their gifts to add to the two they did birth as my parents like to say. They did everything they knew to do for him and more and still do. I am proud of them for that. They still love him and him them.
I know that as much of a pain he may caused with the trouble he has gotten himself in, they still have some good times and laughs to look back on. I just think of his crooked smile and it makes me smile. My parents always included us the same as their birth children and we saw absolutely no difference. We call them mom and dad, brother, and sister. We enjoy it and know nothing else. My brother and sister (who are actually my cousins) treated us like the younger siblings, LOL. Yes, master…anything you say master! We were also their guinea pigs for many things…food projects, games, clothes, and so on. I remember my brother making some weird eggplant dish in high school and I had to eat some…yea still haven’t eaten eggplant since (just cannot).
My parents knew they would not hurt us though and we did too. As much as they grumbled about having to babysit and watch us like any teenager, they never let anyone else harm us. They always made sure we ate and were somewhat comfortable (even if that meant under someone else).
My parents are awesome! They acknowledge my biological parents.They understand the relationship that I needed to have with them. They accepted all the craziness that came with our lives and I commend them.It was never easy and they never thought it would be. They shed tears, prayed, shed more tears, laughed, and loved. They laugh and love as much as they can because it is the key to our life. I just cannot imagine my life without them in some form and I will be taking oodles of video of these people soon. I need to have it so it can be my ‘forever!’
Staring into the emptiness
No thoughts no words no dreams in the day
Lips stitched together with the invisible sinew of the pharaohs
Crying out for an explanation
For something anything that makes sense
The world folds in on me in a labyrinth of contrasting light and dark
I sit blinded, unable to adjust
Wishing to get up but an anchor weighs my heart and body to its spot
The captain steers me
My head turns, my teeth appear, and my lips turn upward at the the corners
I nod my head toward someone and move my hands over a flat surface and screen
Then the captain takes me into a room and he lets water run down my face
Daydreamer dreaming about dreams
Dreaming about life
A life that has escaped her
A laugh-less house
A house void of the pitter patter of litter feet
A house that never became a home
Built on cracked glass waiting to burst into a shrapnel
Impaling and then poisoning every aspect of her life
Believing that she have nothing left to give
Nothing left do
She can’t meltdown
Crying seems an abstract thought, she is beyond that
She is angry
Days go by, weeks, months
Then she is calm, too calm
She is thinking about the hurt that was caused
The missed opportunities, past and future
She must start over
But time is not her friend and she honestly does not want to
She blames herself for everything
She finally allows the demon in
It reaps her soul and ravages her very being
So She WEPT
Flesh of my flesh, blood of my blood
I have been flayed slowly one layer at a time
Each piece seemingly to happen over an eternity of tears and curses
Bleeding and praying
Watching my heart pulse, quiver, and sputter
You pull another layer away each time you open your mouth
I watch my brain synapses jump, light up, spark, crackle, and fizzle
Another layer is peeled away as you refuse to share
Finally my remaining muscles are stripped of nutrients and size as I sit waiting
Because the last layer is snatched off the bone because love is lost