Oh MG

MG warrior

So each time I go to the hospital now I feel like a celebrity. The nurses there are so sweet and I love them so much and they I feel like after 2 years there with them we have been through everything. I mean they have been through all my most personal moments that’s for sure.

But lately, when I have gone it has not necessarily been for any service of my own. I have gone to visit my Uncle or for quick lab work or something of that nature. And while I am there if it’s at the end of my work day I swing by the unit that does my plasmapharesis (plasma exchange treatments). Nearly each time I have gone they are excited to see me and ask where I have been because I have been one of their special cases and because it has been so long since I have been in that they almost worried that something had happened to me, lol. I told them that I working to only have to come in only 3-4 times a years as opposed to my usual 6-8 week intervals and they were shocked. Having just made 12 weeks they were even more shocked and excited.

Then they keep asking me to speak to every MG person that is currently in the room when I drop by. Each one asks me a million questions which I am happy to answer as long as they do not mind. I answer until I noticed they are too tired to answer. I may start giving out my card with my email so that they can continue to contact me afterwards with questions. So far each of them have said they have not had much luck with local MG groups in the area and have struggled getting help with answers to normal questions to struggles we have. Like tools we can use, services that are offered and normal side effects and issues we may encounter drug interactions. I told them I had to find a lot out on my own, that I had many of the same issues, and that I had not been diagnosed much longer than them, only 12-18 months longer (I’m just over 2 years) but that I was vigorous in my questioning, poured over research, and then found dailystrength.com and blogging as 2 great resources. Without them I was quite in the dark.

The information you learn online in your normal search is neatly packaged in a sterilized neatly defined bow and you have to learn to dig deeper. You have to learn to ask the right questions. And sometimes this is hard when you have just been diagnosed and are not sure what those questions should be. When I was first diagnosed my only question was could I still have a baby. I got mixed answers and it was not definitive, and then as I did more research and MG became more recognized in the last 2 years I found some doctors that had definitive answers but this was also linked to knowing what medications I was on, which at the time of I first asked my question, I was unsure which medication I was to be put on (cell cept, imuran, etc).

I feel proud to be able to give information about MG. Letting people know that you can go longer than you have before. I was once in their shoes unable to go more than a few days, then weeks without treatment. Now I can go months. You will learn how to push yourself to greater limits without harm.You will learn how to rest, and you will learn how to feel your symptoms and say I need rest but I can tough it out just a bit longer. My insurance is knowing I have a suction machine at home, and knowing if I need to I can crush my mestinon up and place it on my tongue on the roughest day and still get through on dehydrated days and refuel but I have not had to do this is over 6 months. I am learning where my breaking point is.

I still have anxiety once I begin to have a bit of difficulty swallowing and think that I may begin to choke but I think instantly I must calm myself and find my water and just breathe because obviously I am still doing that, lol. Or if I am struggling even more so, I must cough until my throat is cleared. Then I feel better and just relax. I do my best not focus on these tough spots but on the fact that they are fewer and farther between than the last time and that makes me feel amazing. My last one was 12/14/15 where I was choking in my sleep and only got an hour of sleep. However, I believe it was because I had hardly had much to eat or drink all day and then had something fairly acidic right before bed (causing passive reflux) and we already have mucus issues with MG. So I struggled all night. I kept waking up gasping for air as my airway kept getting blocked with mucus. It is so frightening. It hasn’t happened to me since well before August and I should have known better. Let’s just say I learned a hard lesson and along with that anxiety came a new found determination to be smarter.

I pray that from this post today, MGers all over learn that small steps can take you a long way and that you will not always be where you are now. Things can get better. They have even made advancements now that have been approved where there are new drugs that do not suppress the immune system to take in place of cell cept and imuran. I may be switched to these soon. I will let you know how that goes if this is the case. However, stay strong, know that if you have set back it is only temporary. Learn from it, use it, embrace it. We have MG but it does not have to run us.

A Song in My Heart

Most mornings I wake up I have a song in my head that I cannot seem to get rid of. It is not always the same one but sometimes I will have the same one in my head for several days in a row in the morning. It does not usually stick in my head all day and if you ask me what song it was that morning I may not always remember by thee night much like a dream.

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A lot of times it tends to be a song from my past that I listened to none stop that meant something to me at the time that for some reason I was fixated on. I mean some of them are truly catchy songs that if I sang out loud would probably embarrass even the most openly sensual person, while others are some of the most saintly encouraging gospel tunes ever and everything in between.

These songs all remind of a story each morning and play automatically through my head even when some songs I try to will away due to the nature of the song (not the memory it brings necessarily, lol). When you know the unedited version of my neck, my back by Khia, wel… I will say it was a challenge to know the song due to all the people I hung around, being young, and playing in clubs. I had to know the words and be in the know back then. I did not want to be labeled as an outmode.

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But now I look at these songs and sort of laugh, because the mornings that I manage to NOT have a song already flitting in my mind I feel off. I feel incomplete and wrong and the day feels ominous and brooding like something bad may happen sometimes.

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So sometimes as soon as I get in the car or fully wake up if it is the weekend, I get the music going and get a song in my head and start the day of right and get that song in my heart. I get myself feeling a lot better and say it will be a good day and get that self talk going. I start pouring in what feels right! I make my own recipe for a good day. I make a great playlists and get it together just randomly going through my iTouch or the radio and it inspires me! When you feel angry with someone or the day is just going sideways, ask them to put a song (or a few, lol) in their heart and you do the same and see if it makes things better before you both come back to one another and talk. It can truly work wonders!

Change Happens Regardless

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Yes I do enjoy some things to be routine but I prefer to shake things up often because being stagnant causes me to get comfortable, bored, and complacent. Now don’t get me wrong some things require routines and organization and I do love this as well. I love having a planner and I love organization. But I also love to shake things up and make changes and adapt. I like to be flexible.

When one is too comfortable and complacent we tend to ignore and miss truly amazing things in life. We go the same route to work and miss the new restaurants, stores, and other miscellaneous places that have opened because we just do not go this way. When we eat the same foods we get bored with out selections but have no idea what we want because we have yet to discover it. We have yet to try new things.

It is only when we branch out and try to explore and try new things that we can truly appreciate the changes and wonder all around us. I enjoy it. It is always my goal to try new things. I use to feel like I had to go go go! But now I have learned to relax and enjoy the things around me and take a break. During my breaks I slow down. I may read or sleep. Once I have refueled, I find new and exciting things all around me. I have found so many new things around me lately that it is ridiculous.

My husband laughs at me. I do not have to just go on groupon, living social, or coupon books (go.play.save) to find these things though they definitely help when I seem stumped sometimes. I have learned to make my own fun. I have learned to create trips, enjoy myself, and even throw darts if you will at random locations, activities, and experiences online to try.

Sometimes my husband looks at me like you go right ahead…I will catch you when you get back.

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Other times he’s like you go first and uh I guess I will try it…I’m like come on man up you got this, as I secretly laugh maybe even a bit evilly.

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Sometimes I may even be a bit nervous but I will never tell him which is which, LOL.

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Then there are the times I have to make him let me try it first because He is trying to run me down to try it first. I’m like hey what happened to ladies first and he’s like that’s antiquated woman, LMBO.

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I think soon I will have to make a huge literal dart board or wheel and start picking my activities at random. I like the whole game of chance and mystery behind it all.

Blessings Big and Small

I wrote a post a few days ago about being in awe the other day and found it absolutely strange that someone liked my post that had the most opposed view of life than I. I was very skeptical of their reasoning behind why they chose to read my blog. I still am, not because I do not first want to believe the good in people (because I thanked them first almost blindly before viewing their page) but because then once I saw their page and the links on their page I was nervous of why I was so put on the spot. Why they chose my post to reblog.

Then I said hey I cannot worry about that. For whatever reason they chose it and poured it to a vastly larger pool of people I hope it reaches people who will find people who understand my message and my heart. That understand that I enjoy people as they are. I found the links within their blog hilarious because they reminded me of my younger brother and though I do not always agree with him and the things he does or posts in his facebook page he is quite the lil exhibitionist and I find it quite freeing and enduring because many say the same of me, LOL.

I would just rather do mine “exhibitionist” acts in person rather than where people can will see it online and it has a life of it’s own to live forever on the internet, LOL. When you are 60 with children and grandchildren would you rather say you did some of these things and laugh or have proof that you were caught doing these things. Some things are better left saying you did them than someone having proof of your “wilder” days, LOL.

Anyways, back to the blessings…I was in such awe that day for so many reasons. It was strange the mood I was in all week. Then this past weekend we played dirty santa with a group of friends. My husband who had never played was hilarious. He was like what is this game. I said I have played a version but I am not sure it is the same thing and indeed it was not. However, the version we played was much like white elephant. A price limit of  up to $10 was set yet obviously you know some people were going to spend more. Then the gifts are wrapped. Numbers are put in a container and then each person draws a number. The person who draws number 1 goes first. They open their gift and show everyone. Then the person who has 2 goes and either can steal #1’s gift or open one of the gifts still left on the table. If they steal #1’s gift they get to open another gift on the table (that they did not bring). Obviously you want to be the last to go, LOL. You want to see what everyone has so that you can steal what you want. Some people play that #1 gets to go twice since they either get the crappy gift or everyone steals from them. We did not, LOL. We established that rule before we started.

My husband got a gift he needed a key finder…remember in one of my post Goldilocks lost his glasses; one of the 4 things he always loses was his keys…I was so excited! The funny thing was before we could even put it on the keys the next day, we had to search for them for like 20 min, LMBO. Then, I was number 10. After it was stolen 3 times in the game, I finally was the last to steal it, a walmart gift card and a huge Hershey kiss which was something my husband wanted and originally got and was stolen from him. So I was his white knight or should I say Chocolate knight in more ways than one, LMBO.

The funny thing is every time we go to events and there are raffles and we win which has been sort of often lately thank GOD it has also been something that we have NEEDED not just wanted. I have been thrilled. Things that have helped make our (mainly my life with MG) easier. When we can take shortcuts or get a little extra cash it is always helpful. Again another positive experience for the hubs and I got to see him smile and have another new things to put on his list. What fun!

 

Reciprocating Inspirations

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I love being the first! Some may say that this is vain or even narcissistic of me but I do not care. I enjoy being the first person new staff meets or new members meet. I can say the same for going to a new bloggers page and meeting them in the world o blogging. If only I was an admin for WordPress or something on that level. I so enjoy going around and being a bright spot in people’s day.

I love giving them encouragement and letting them know that someone is there and reading their work. I understand that we are not always looking for a happy go lucky person but we are always looking for someone who is willing to read/ listen what we have to say even if we do not always want to them to say something back.

Sometimes you need to vent, or just leave a post/ picture THERE hanging to be seen as a representation of who you are that day. I totally get it. I want you to know that I am not judging you and I am cool with your flow that day. I support whichever way the wind is blowing you at that moment because you are working through something at that time (in most respects). I have yet to find anyone that has dropped by my page and I have not gone to theirs and felt welcome.

I have also done searches for things that I am interested in and found equally amazing blogs and dropped a few lines to absolute strangers of astonished amazement of their works and/ or their blogs or offered my support and they have also welcomed me with thanks or friendship.

I enjoy the reciprocity I have found in the blogoshpere here and I will continue to offer my heart in hopes that others will continue to offer theirs as openly to me. This is what I see in their blogs, their hearts.

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12 Weeks are upon US

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So here it is…12 weeks! I have been blogging about it for months. Some of you noobs are like what are you talking about? I had to go 12 weeks without plasma exchange treatment to even be considered as ready to TRY to have a baby as I have a condition known as Myasthenia Gravis. For the last 2 years I have been on a roller coaster of emotions, doctor’s appointments, and thoughts!

I have been through it all. The if this guy would have had his act together I would have been where I want sooner (but then would I be happy). Who wants the drama of divorce or children with another man and trying date. I’m not saying this is a bad thing, I’m just saying it is not easy. I would probably be one of those women who put their whole life on pause for my child and forget about my happiness and makes excuses about it because that is how I am. I am overly driven but would give it all up for my child(ren).

So now that the 12 week mark is here. I have a million and one doctors appointments, lol. I went from having 1-3 doctor appointments per week in the past to none in several months which has been very freeing. But now I have 4 this week and then treatment (plasmapheresis aka plasma exchange). They are running a full battery of blood tests and deciding how and what meds to tapper first. Then They want to see if I should continue to cell cept to switch to another immunosuppresant. I figure if they do lets switch to a newer one that does not have the side effect of suppressing the immune system. I am glad for this new advancement. Getting sick is NOT the business as my friends say, lol. (It’s not fun). I am just glad to be stronger.

In other news the other doctor appointment I have is a follow-up because the fluid pill they put me on to reduce the edema they believed I had that caused an 8-11 pound weight gain in 10 days is still here. I think I have gained 2-3 more pounds but I am not sure. However, it is safe to say that medication has not worked. So we will have to figure out another solution. I would prefer not to increase to amount of the fluid pill because when I first take the pill in the morning I go to the bathroom LITERALLY every 10 minutes for about 2 hours then after that every 30-40 minutes for about 2 hours then I go at my normal rate. But either way I do not really notice much difference in my hands, legs, feet during this time. My hands reduce just a bit but not much and before long they are back to normal. I think it’s inflammation but I am not a doctor.

I also asked for a treatment because I though I made it to 12 weeks and could passively go a bit longer, if I do not have to and we are not able to start for the baby right away I will not force my body to go through that right now until I come off the cell cept. I cannot try for the baby until I am off this so until then I will get treatments until they say otherwise. I will still try to train my body to go longer than 8 weeks though so it does not rely 6-8 week treatments but prefer not to feel super tired, drained, and have so many symptoms if I do not have to. Cell cept causes birth defects so I know there is no trying for a baby as long as we are on this…we even had to sign a form before I was put on this acknowledging that I understood the risks of the medication for possible birth defects and that we would use proper birth control. The form even spelled those out and how many forms to use if you didn’t use the specific types the manufacturer/ professionals preferred they wanted you to combine certain types.

So though I have three 4 day weeks coming up, they will be filled with refilling my body’s reserve tanks, but draining my emotional energy reserves and probably a bit more of my sanity, as if I have much of that left, lol.

 

Always in Awe!

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I frequently sit in awe of the things that God does for me. I understand that this may turn some people off my blog because they do not believe in him and I do not always speak openly about my beliefs. But make no mistake that though I do not make my blog solely about religious and sanctified, I am spiritual and I do believe in God. I do not force anyone else to believe by any means. I find that I love my diverse friends that believe in so many other ways. I feel that not only do they center me more in my way but that theirs are still very interesting and that it could be so for them.

I enjoy seeing them love others the same as I do and this cannot be altogether a bad thing. Moreover, I find that being in a life where I can respect others for their differences is a very valuable aspect that I wish everyone had.

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And my goal is never to offend, which I hope and pray this does this image does not do but someone may feel it does.

My most fun moments are when I realize that if I have prevailed before that I can again because my God has allowed it and will do it again. I know it is a test to allow me to be stronger and that I must pass it. However, sometimes not always in the way that I expect. There are so many times that I know I could have and should died and God saw fit to let me live because there was something else that he has planned for me. What that is I am not sure, but he has not brought me through some of the most amazing and terrible things to leave me alone now. He has more things in store and he is not done with me yet and I know it will be amazing because I can tell he has been preparing me for something GREAT!

Writing A Book…

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I have been told by several people now that I should write a book. People from all walks of life and I really have been wanting to for quite some time. I have thought about it from several angles. I wanted to do several types of books but have ultimately that while I would love to write a book based on my adventures in life I do not want to write anything so closely related to my life that my family or friends feel in danger of me putting their personal lives out in the open. So I have decided that a book very loosely based on my me with outlandish characters and adventures would definitely be the way to go. This way I can go in direction I dare to go.

My other dilemma is fear of length and intensity of the book. I had to write a something much like a thesis for my master’s project in school and it was about 80 pages when it was all said and done. Needless to say it was the longest and hardest thing I had ever done. It took the better part of a year. Obviously you need someone to give you financial backing and believe in you and your idea enough to think it will indeed go BIG.

I worry that something like this will not only take just as long if not longer but the stress will be insurmountable. Writers are always saying that though they enjoy what they do, it is not without it’s flaws. I do not want to be that person holed up in my house for months without anything flowing. Now if things are constantly or almost constantly flowing then fine…so be it. Then I will be ok with that. I will be fine with constant mutterings and pages upon pages of material. I would prefer to have to try and cut my material than having to draw it out. Though yes it will be tough as I will undoubtedly grow a strong bond for all my characters and their stories I know this can be done (even if I have to make a book centered around just that character later, hehehe).

My last problem is finding a central theme and focusing on it and staying focused on it through out the entire book. I also know that I would like to write a book that is a series. I want people to grow with my characters and hunger for what happens to them next in the next book. I love books like this. Where you become invested in the characters and they grow, age, love, and make mistakes and such. It’s fun! I am excited but now I have to research so that I can find out what avenues I can find to do these things.

I am will do this but if you guys know any helpful tools and such lay it on me! I am all eyes and ears!

Caught in Purgatory

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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!