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.
As everyone else states how they will make this year so different from the last and make it better than the last, it should be a given! But is should not be something that you state at the beginning of the New Year. I feel that it should be a statement at the beginning of each new day. That each day should be better than the last and not to make some ridiculous statement of how the WHOLE next year will be better than the last because you are going to try some trendy new thing or some idea that you are not likely to follow through with.
Now if you manage to follow through with it, kudos, but the idea is that if it took you a NEW YEAR to do it, well, I’ll bet it was several bad days just before that end of that last year that drove you over board and careful planning before hand. You did not just decide like many resolutioners that you were just going to do something with a blind lust and walah (or should I say BUST) it was thought up and did not happen.
I created a nice bucket list in 3rd quarter of last year and plan to do one every year from hear on out to do more activities and such each year. I have become to stagnant in both my thinking and life. This is not a person I ever thought myself to be and not a person I will be. So I changed it. So far I conquering this list pretty well. I even have had help from others.
My point, planning is key. If you want to make a true new years resolution, fine, but you likely did not make the resolution at new years. You said that was when it would start and planned it long before then. If you did, then you still need to plan and organize it to make it successful. For example, people who are quitting something addictive or trying to lose weight. These are linked to behavioral things and you need to change both your behavior/ lifestyle but also get a support system. This involves who you hang around, and what to do if you slip (relapse) so that you are able to get back on the horse and keep going because these things happen. A plan needs to be made in advance. You may say how do you plan for what you cannot foresee, but you know you may get sick, or could be pressured by a friend, or go on vacation, or plain lose willpower, forget, etc…what is your plan to get back into the swing of your resolution before it is too late? Before it is next year and you are saying those same words again?
I do not make resolutions I make plans, what will you be doing! Make S.M.A.R.T. goals instead!
So recently others have been seeing my bucket list and apparently they have made comments about it and found it just as interesting. My younger brother made the comment that I was too young to have a bucket list. He was not aware of the more trendy phenomenon of people creating them just to be sure that they live life to the fullest so that they have no regrets. It’t no just for those of us who are sick and have chronic illnesses. I know when I first told him it alarmed him though because I do have a chronic illness and he probably thought the worst. But I explained that people with MG live LONG healthy lives and that I created my list to ensure that I do not allow myself to sit and wallow in my disorder. Bucket list are meant to inspire you to do these things not just before you DIE but just to get out and do something more than get up, go to work, come home, repeat!
SO with that said I have a master bucket list that will not change but will slowly grow over time as I see fit an accomplish things and I have an annual list that I will create around the 3rd quarter of each year and have from that time to the end of the following year to complete. It will give me great joy to complete the list because I enjoy creating to do list and crossing items off of them as I tackle them. I also enjoy planning and organizing events.
Anyways, I have been enjoying finding new ways to tackle the list and when I can get them done. Some of them have been harder than others due to time management. I have found that I am not the only one who wants to see me accomplish these goals and that feels great too. I always tell people I do not want anything for Christmas or my birthday. It’s not because I do not feel worthy or I feel people cannot afford it, it is because I honestly feel blessed enough and would rather give than receive. I also feel that my family has given me so much already that I could want/need for anything. However, my dad saw my bucket list and he decided to scratch one of the items off of it for me and I even more grateful.
My dad bought me my go pro. I can take it with me on my adventures now. I am ecstatic. My mom said he was really looking for it. I’m proud of him because he really went above and beyond. Usually he defects to my moms for what all of us want for different events and this time he knew. Handy detecting dad, lol. I shall call it my PRECIOUS. Can’t wait til our trip overseas!
Annual Bucket List: 2016
Do a local bike race
get yoga mat/basic training
Visit wizarding world of Harry Potter
Read 50 books — at 22 books almost halfway
Buy a Go Pro
Go Sky Diving
Go to a State I have not been to before
Go to 5th Cirque Du Soliel Performance
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
Have a baby/ adopt a child
Create a Charity
Run a business
Travel overseas like a nomad (England, France, Italy, etc)
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 love to to plan trips and do things with my husband! It’s not an easy thing to do because he is not big on planning or doing much of anything because he just thinks about going to a place and that’s IT. He thinks about these grand places to go in or out of the country and then never thinks of when he wants to go, how we are going to get there, how much it will cost, where we will stay, or what we will do once we are there. He does not plan one detail at all. He just knows he wants to go or there may be one thing in particular he wants to do there such as the casino and then he has no other idea of anything else, LOL. Planning usually helps reduce anxiety for me…but when it comes to planning with or for him…sometimes I wonder if it does, LOL. I sometimes get a knot in my tummy because he I know his reaction because he is so against things. But I am hoping this is different because this is one he really wants to go on! We both need this vacation! We haven’t had a vacation since our honeymoon and it was okay, but I was near critical with MG and was hospitalized a day after returning if that was any indication of what sort of condition I was in. so back to planning!
So then that’s where I come in raining on his little parade, LOL. I hate to say it this way but he sees it this way until we get there and he is having fun. He hates all the hard work I put into it until then. I badger him to find out when it the best time to take off or I tell him when I have off and that he needs to take off then and give him about 2-4 months advance notice. Then I begin looking at hotels in areas near the area (if he happens to know the area better I ask for input). I am the deal finder so I work my magic to get us all the best deals. Then I find groupons and trip advisor activities and start annoying the snot out of him asking him about the local things there to find out what he might like to do. I know he hates it when I do this but I try to give us a few things to do we have never done before on every trip we have ever been on so we have some really cherished memories. I always try to NEVER pack our itinerary so that we really have down time to nap, relax and surf the net, go for a walk or find something new if we are driving and just go there if we want instead of something else we may have planned or after something we have planned.
Then comes packing for the trip. He always wants to KILL me! I have it down to a science. I have excel spreadsheets created based on seasons of the year (fall/ winter and spring/summer) and then I simply can change the amount of stuff I need to add based on the length of the trip. I know it’s sad but I usually don’t have to buy things once we are at our destination. Plus I pack some extra things for the beanhead I’m married to who happens to leave things or things he won’t need something because he refuses to pack until just before we leave. MEN! I’m so excited I pack days beforehand. In a total emergency I may pack the day before and that means I’m stressed to the max, LMBO.
Then we hit the road with 3 gps’s (the regular one and both phones) and a printed turn by turn directions. Believe after one horrid trip of failed proportions driving one year going whitewater rafting due to miles of construction on a highway I will never again go without this many back-ups again, LOL.
Once we get there to our destination, I will all be worth it! My husband gets this glow about him that is so hard to explain. He just lights up like a child on Christmas. I believe for our trip in 2 weeks it will be seeing his family and showing me all the places he use to frequent when he was a child. Telling me a million stories! But I also believe it will be sharing new experiences with him. Taking him to places that he did not know existed in a place he lived for so long. He moved before he was an adult, so I’m sure there are places he did not get to see and you age and your interests change and grow now he gets to experience things that fit those desires. I can hardly wait to experience moments through those eyes!
I enjoy having firsts with my husband! I enjoy being the one who he says opens his horizons and takes him to places and experiences that he has never had! It makes me proud!
Hehehe the title just makes me laugh! Yes I’m a dork and I’m okay with that! So I am excited because my husband and I have not been on a good trip in quite some time. We will be going on a good 5 day 4 night trip up north to visit family and friends. The main goal was centered around my little brother whom I only get to see every few years. He is incarcerated. This is quite hard for me to say because people look at you sometimes as if it is a disease you can catch when you say someone close to you in in prison and for a long period of time. They always want to know why, how , and so on. If you do not tell the and they find out for themselves they draw their own conclusions. However, I never care much either way because unless you speak to him yourself and you are God you do not know enough to make such a call to Judge that man.
He is doing his time and he is my brother. I love him and I always will. I get excited to see him and It’s been about 4 years since the last time I saw him. He is the only one that knows my life leading up middle school. And outside one year in middle school and a few months here or there due to trips and special camps we attended independent of each other we were always together until I went to college.
I always feel bad that more of his family does not get up there to see him more often or even try but hey to each their own. They have their reasons and I will not beg them or ask them. They will not mar my trip with their neutral or negative feelings.
I love planning and organizing so not only are we going there since we can only visit on Tuesday and Thursdays but we will also visit some people my husband have not seen since he was very young. Some family members he has not seen since he was a teen or younger. We will go and enjoy them. I have never been to Pennsylvania so this will be fun and I get to cross it off my bucket list (a state I have never been to). I also think we may try to go to a play or something in NY while we are near the area but we will see. It depends on how I feel. I don’t want to overdo it. I want to make sure there are plenty of things to do but also plenty of time for us to feel relaxed and enjoy each other! That is always important for both of us! We have learned that on our little trips lately. I guess that’s all a part of getting older! I don’t care I love it! Sitting on porches of cabins in the mountains sipping hot cocoa in rocking chairs. Or finding hidden treats that I saw on on the travel channel or heard about from a local that makes some place really romantic and secret.
I can hardly wait!
If you asked me where I thought I would be in today at 30 years old. I would have this elaborate drawn out life plan of how I thought my life should be with a husband, children, the perfect job, and all my debts paid. I would be happy as pie nesting my little life away.
However, this is not where I am and about a year ago due MG I had a panic attack from anxiety about this. I seriously lost it crying and upset because this almost seemed to impossible at the time. Yes, I was married but nothing else seemed to be going like I wanted. Including that diagnosis, which was adding more debt to my already huge school debts.
So after I had a long cry and settled myself down. I had to think to myself again about the positive. About all my accomplishments. Then I had to say what can I still accomplish. It may not be in the same time frame that I had in mind but is is it still possible and is there another way to do it?
I was more determined to try new things.My husband and I had to start trying to do things together but he was so busy with his new job that I could not bother him. SO I starting finding little shops and places on Groupon and Living Social on my own to do. Having also just moved I found all these new places to go. I also re-evaluated how I travel because travel is not dead and there is no excuse not to go places.
Organization and planning has always calmed me, I enjoy such things. I find that planning trips and activities are fun. I planned more games nights with family and friends at my house. I planned more dinners. I also planned more out of town trips and said yes to more local events that my friends/ family invited me to. I still take it in moderation because overdoing things without rest can flare my MG but I definitely enjoy life so much more now without the heavy time limits that I was confined to before.
I am definitely just happy to know that God has a plan for me and that if it is mean to be it will be and for now it seems he has a different timing for my life and these things that I desire are coming just not now.
Preparation BEFORE you go is key! while you are healthy make a plan for IF or when you go. This paper or electronic copy should have all your information on it. I have both. The reason for both is that I hand a copy to the EMS/ Admission person and I have an electronic copy on my phone for my family and myself to update and keep with me.
On it the following information can be found:
- My name
- My birthday
- My spouse’s name
- The name of my condition- and it’s likely biggest symptoms (which likely put me in there)
- My allergies
- What hospital I prefer– this is important because you may have insurance that works better with that hosptial or because they may have more experience with you or specialized care for you there.
- What medications I am currently taking- I list the strength and the frequency If I have time that day I may hand write in the last time I took it (they will ask)
- All my recent surgeries and procedures/ hospital stays-I promise if you wait until the day you need this it will take you forever to remember if you have had a few (which is annoying when you are in pain or crisis)
- List of my doctors with numbers and addresses
- Pharmacy number and address
Also try to always have a small overnight back always packed that has this list with small things you may want while there. For me in my overnight back is:
- a hairbrush and hair ties
- a phone charger
- laptop/ charger (that’s just me though- I play games and skype usually)
- change of clothes to go home in
- specialty meds the hospital may not have (mine does not have mestinon time release (180mg)
Also while you are in the hospital use the time to recover!!! Use the time to let them help you and ask questions. I am the worst for this always rushing to get back to work and life. If you do not ask for certain things they may not do it, when I say this I mean little things. I am always told I am the easiest patient because I rarely want nor need anything. I only want quiet and so they try to space out how often they come in. I also love how sweet thy are. I ask what I can do to make their day which apparently gives them a smile. Nurses have the hardest jobs. I always love how they commend and cheer you for the little things like passing gas, having regular bowel movements, and eating all your foods. My husband dies laughing and cheers too because he finds it hilarious I get cheers for this and they say well your wife does not get to leave until she can do these things regularly and though he still laughs he gets it. But it is our joke at home when I do it and he cheers, it makes me laugh so hard. You have to make light of these things. We do not see bad in everything and neither should you! You can find the rainbow in any situation. We find ours all the time.
Some meds have the side effects that cause migraines or headaches. Considering that I already have a string history of migraines and a 60 day migraine brought me to my neurologist in the first place that eventually led to the diagnosis of my MG I would say it’s pretty serious. I was already on a migraine preventor before I was diagnosed however, everyone with MG is not.
The downside is that I cannot tell if my fog I feel is strictly from MG or the topiramate that I use and neither can the neurologist. The neurologist is not overly concerned as this was a warning and it it doesn’t overly interfere with my quality of life but it can be quite annoying. I wake up and it can take me longer to get ready some days when I am in the fog. It can take me longer to recall things or I forget things easily.
To combat these things I have tried to use tactics I started long ago with my organization skills that have helped me, only I use them more often and even on my mobile devices. I use checklist (to-do list), sticky note apps on mall my computers, and I carry my planner with me everywhere I go. I let my co-workers, friends, and family know if you did not see me write something down, I will not remember. Moreover, if I do develop a migraine, even with the preventor, I am pretty much crippled. I want to be left alone, in the dark, in a quiet place. Though this is rarely able to happen because I still have to work, I take relpax to help combat this and try to keep pushing through my day.
Sometimes to push through the day even when I do not have a migraine I try a bit of sugar or caffeine (soda usually). If anyone else with MG experiences similar ‘fogs’ I would love to hear your experiences.
So I get asked often about my disorder when I share that I have it. These are usually the days that I am symptomatic and I usually do not WANT to share because I am tired or struggling and cannot share easily because I am slurring or having issues breathing or swallowing but it is the best time for them to learn. I wish then that they would go to the websites I suggest but I know they will not so I share anyway despite how I feel.
- What is it?- Myasthenia gravis is a chronic autoimmune neuromuscular disease characterized by varying degrees of weakness of the skeletal (voluntary) muscles of the body.
- Does it hurt/ do you have pain with it?- Not usually unless you have a comorbid (another disease or disorder with it) issue like arthritis, obesity, or diabetes. You are usually just fatigued mentally and physically.
- Will you ever get better? Is there a a cure?-It can get better with treatment but there is currently no cure
- How do you manage it?- With Immunosuppressants, steroids, and in my case plasmapharesis. Your life becomes these things and hopefully overtime you are able to taper done the doses of the amounts you take from when you were first diagnosed while staying stable.
- Can you still have children?- Yes, but you may not have as many and you are likely not going to get a natural birth as pushing is a muscularly fatiguing exercise which is dangerous for us myasthenics. Therefore we are limited for such a strenuous and highly repetitive endeavor and must have a c-section if we are cleared to conceive. Moreover, we are usually told to wait 2 years after diagnosis because of the increased risk of respiratory failure that can occur with myasthenics. I almost experienced this and was in denial of this ever happening to me and was glad that we did wait and not push the envelope.
- Is it contagious?- No, it deals with a defect of transmission of nerve impulses to the muscles. Therefore no issues with bacteria or viruses there for you to catch.
- Is it hereditary? Is it genetic- Myasthenia gravis is not directly inherited. Occasionally, the disease may occur in more than one member of the same family.
- Can you still have a normal life?- You can have as normal a life as can be expected when you follow your medication routine and work with your team of doctors. You can still exercise, eat a normal diet, and all have fun. I still enjoy everything I did before but with more rest breaks. But as we get older we tend to have to do that anyway right, LOL. The key is to plan those rest breaks and let people know when you need to rest and/ or if you do not feel well. Otherwise enjoy your life!
Additional questions can be answered at websites such as:
So there are times when you find that you are busy or you are enjoying yourself and you notice you start to feel very tired, fatigued, or all your symptoms start hitting you at once out of the blue after being controlled for a very long time. If you are stable and you cannot seem to figure this out it is highly likely that you missed a dose of your maintenance medication which for many of is mestinon (pyridostigmine).
I carry a pill caddy or pill organizer that is divided into days of the week and morning and night. Though there are ones that are more advanced that have more divisions in them. This suffices for me for now. However, there are days that I makes mistakes when I am tired. At the beginning of each week (Sundays) I sort all my pills into the caddy/ organizer for the week. However, when I get busy or I am out and about I tend to forget at times to check the time and forget to take my mestinon. Sometimes I even get as far as the next dose (a full 8 hours away, since I take it every 4 hours) before I realize I missed it. That’s when things start making since on why I was slurring or feeling weak or having trouble swallowing during a meal. If I have just had my plasmapheresis I may not notice at all if it happened within a week’s time of the treatment though I tend to be asymptomatic during this time since the treatments are so beneficial to me.
One big thing I noticed is that I try to take my mestinon as soon as I remember; however, the bottles says if it close to your next dose just take that dose. Well I will tell you this, in the hospital they gave me doses within 1 hour of each other. This made my symptoms go away very quickly and I there were no side effects or ‘overdose’ issues. I am not telling you to do this as I was in the hospital under doctor’s care. I am telling you to be careful, watch your dosage, try to take it the same time each day, and count your medication. Double check it often to ensure you took it to prevent issues. However, if you know that you, and/or your doctors have cleared you to do what my doctors have allowed me to do in extreme situations like that night for me in the hospital, then by all means do so. I would talk to you doctor first. If you find that you are forgetting to take your medication often I would also talk to your doctor, there may be another option.
Sometimes on my busiest days, or days that my schedule changes due a medical procedure, new medication, or job schedule changes, I set alarms on my cell phone/ calendar to remind me to take my pills throughout the day. Do what you must to ensure the healthiest you. We hope a cure is in the works soon to stop this madness but until then preserve your body to see that day!