Challenge Accepted: Love/ Hate Blogger Challenge

love hate blogger challenge

I want to thank Jennymarie4 for nominating me for the Love/Hate Blogger Challenge! Let’s dive in…

Here are the rules:

List 10 things you love.

  1. God.
  2. My Family.
  3. Music- I love neo-soul it relaxes me and I love to sing and I play the clarinet, xylophone, and dabble on the piano.
  4. Reading- I will read just about anything I am and will sit and read for hours.
  5. The Asian culture- I love authentic Asian food and have learned to make many dishes.
  6. The sims games- I can play for 6-8 hours straight days at a time.
  7. Porter and Pepper- our 2 mini schnauzers, they are so expressive and loving.
  8. Arts and crafts- I enjoy creating and trying new things.
  9. Adventure- which encompasses traveling and my extreme activities like bungee jumping, scuba, ziplining, mud races, etc…
  10. Bunnies. We used to have one when I was really little. I collect stuffed ones. Its a rule in my house you can’t eat rabbit, lol they are sacred.

List 10 things you hate.

  1. Car problems
  2. Money issues.
  3. Traffic.
  4. Disorganized events.
  5. Obnoxious people- like loud and belligerent, lol (like the drunk type yet they are not drunk that’s just their personality…ugh).
  6. Bad odors.
  7. Mean/rude people.
  8. Child abusers.
  9. Animal cruelty.
  10. When my family or friends are going through a rough time, and I can’t change it.

I now nominate:

  1. model1marvel
  2. brighton bipolar
  3. Laurna
  4. Lauren Hayley
  5. anxietyauntie
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What if’s of the Vaccine/ Cure

In lieu of the the trials of a vaccination of MG underway (though still in its infancy- still being tested on animals) a lot of what ifs have been playing through my head lately. AS with many medications, vaccinations, and drugs, there are always risk associated with them that if you wanted to take them you must agree to. Moreover, there is always the moment of does the benefit out weight the cost. For example, if you have an allergy to the drug, how bad is the allergic reaction if it is a possibility it can cure you?

These are the things that I have been contemplating as I have been awaiting news of trials in the U.S. I want to somewhat know what I believe my boundaries are before the vaccination/ cure is available.

My Weird Thoughts:

Before I begin I will say to you some of these things may sound weird but i do not care. I once asked my dad’s cousin if I was weird and he said yes. I was shocked. I was in high school and young and impressionable and a little hurt. Then he said the following to me:

Yes I am weird but weird people make the world go round…how many people say I want to grow up and stick my hand up someone’s rear all day…but a proctologist does just that. Though I am not a proctologist, I am not alone in the world of weird people, LOL.

If I had to give up a limb for a cure?– this is a hard decision to make as having a neuromuscular disorder forces us to feel as if there are times we have lost a limb, but we do not wish to feel this way. We want it back instantly, we do not take it for granted and would not trade it for the world. So to lose it for a vaccine I think If I had to choose I would say an arm but I would hope it would never come to that. That this would not be a side effect, or a cost, LOL!

If I had to give up one of my senses for a cure?– If I had to give up a sense I would say my sense of smell because it has at times gotten me in trouble. My sense of smell is very sensitive and has caused me to feel sick when others are fine due to horrible odors that over take me. Moreover, as it is tied to my sense of taste it has cause me to gag and ‘taste’ odors and the reverse is true and that makes for horrible moments if you eat something gross or smell something horrible. Dissecting cadavers in college was horrible for that reason alone. Anytime I smell the same scent no matter how good or bad if it is moderate or strong it will make me sick. Vomiting is even worse I continue to vomit due to the smell and the taste. And when you have MG the severe/ volatile repetitive muscle action is horrible for you in that area of the body and can cause choking. I have to eat a banana if I think I may vomit…it tastes the same coming up as it did going down to prevent that cycle…I know that sounded gross but it’s true.

If I had to give up the ability to have children/ sterility?– I am not sure if I could since I have dreamed if this since I was a child. I know I can adopt and this is an option only if I cannot naturally. But I think I would still opt for a cure and then adopt and if It’s God’s plan we may still be able to have a baby anyway.

If it caused me to gain weight? Sure would I would fine a way to get that weight off I am fit and active and I eat healthy, LOL

If it caused me to gain more disorders (mental, social, or emotional)? Well it depends on the severity of these mental disorders because I already have anxiety and if it can be managed with some blogging, and therapy here and there it may be worth it. The bills for MG are astronomical and the amount of drugs that go into your body versus the process of talking, blogging, and support from friends are just not worth it.

If it caused cancer? Well the drugs from MG have that risk as well so you just have to see how much of a percentage this carries with it and what types.

If it caused physical deformity not quite losing a limb but scarring, strange fat deposits, calcium deposits, weird skin conditions, etc…? Again some of the drugs with MG already carry this issue like prednisone so it’s about seeing how much more deformed you can be and if the risks are higher and if it more (worse) than what you currently deal with. Again not everyone reacts the same with any of these drugs.

If it caused eternal bad breath or body odor? Man I do not think I could do it for this. This is a deal breaker for me. I have a heightened sense of smell and I cannot deal with things that smell. bad. I also cannot explain my stench away to anyone no matter how medically induced it is. It would not be worth that for the rest of my life. I know that sounds petty but I to smell horrid for the rest of my life and no one come near you because of your smell is rough. I am very social and I enjoy hanging with people and that would torture me, LOL. I would not even be able to sit in a room alone from the stench, LOL. A total deal breaker.

From the wondering brain of a weird person, LMBO!

Anxiety of the day is strangling my MG

So i have surgery next week and usually that would not bother me except its THE surgery triggers my anginophobia. It is a surgery that fix my tracheal stenosis that was caused 7 months ago that was just found last month that has been causing issues for 7 months and everyone somewhat ignored. So now the problem is getting fixed yay right..no!!! The problem is me getting over the anxiety of feeling panicked of feeling suffocated. Each day that gets closer I happier this is closer to being fixed and ready to be on the other side and ready to be back to normal. Then I get more anxious because I am thinking it’s almost that DAY. The day or moment of DOOM.

This constant battle is draining me. The stress is causing some symptoms to catch me off guard but I am actually handling way better than I thought I would. I think partially because I have my plasmapharesis treatments now to make sure I am strong enough for the surgery next week and because I have my family, friends, and blogs to help. I am also trying to keep myself busy, but it is messing with my sleep. I thought my husband was too blame, but that was only partly. I have struggling to sleep because of my anxiety. I cannot get it under control so I am dealing with my anxiety flaring up again.

Only 5 days to go! I can do this! I have no choice, but I know it has to be easier than this! I have to dissociate better than this! I have a fun-filled weekend and 2 more working days (tomorrow and Monday). Hopefully I can get my mind somewhere else.

FAQs of MG

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.

FAQs:

  • 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:

http://www.ninds.nih.gov/disorders/myasthenia_gravis/detail_myasthenia_gravis.htm

http://www.myasthenia.org/

http://www.mayoclinic.org/diseases-conditions/myasthenia-gravis/basics/definition/con-20027124

Pride, confidence, and MG

confidence

I have struggled constantly with pride and confidence while dealing with Myasthenia. I did not use to think it was pride but it most of it boils down to pride. I find that being so healthy and independent and now having to let people know when I may not feel well or calling doctors constantly is not my style. I am use to being spontaneous. I am use to ripping and running and if I forgot a meal or if I worked through thee night on an assignment, ‘oh well’. I could go for days on 1 night’s sleep, some junk food if I needed to (though I eat pretty healthy), and still make it to work on time. I have always worked a varied shift instead of a regular 8-5 as well.

However, now with MG, this is not helping me. I am fatigued constantly, I have to plan rest carefully, and I have had to learn to ask for help. I have had to ask for help…something I am just not use to doing. I feel like if people wanted to help me they would have been doing so all along. Though when I was diagnosed an out pouring came from those close to me, I had to learn to accept it, even though I did not want to.

I had to learn to voice what I needed and how to delegate, just like I do at work.  It was hard. I also had to make sure not to take advantage of people, as you are then in a position of power and it can become easy to do this when people are helping. Though everyone stated that I still was not using them enough, lol…they would let me know if I was. I constantly apologized to them when I needed them for something and felt sorry for asking them for help. I felt like a burden. I had to learn this was not the case as they really wanted to see me better and it would not always be the case as I got stronger, and they were/ are right. It has become so much better.

Confidence is was another issue I dealt with and I still deal. I feel like I am not worthy of many things but I am getting better, that was something I had to learn on a spiritual level years ago with God after being diagnosed with MG I sort of hit ground zero again in that department with that physically. I felt like I was no longer beautiful thanks to my physical scars and appearance. The changes my body was going through and the sound of my voice. I felt so lost. Though I am getting stronger with my MG and these things are getting better and happening less often, I have had to learn that I am the one that is more cognizant of these things than others. I have to have more confidence in myself and my abilities and that no matter what there are those that love me and know my worth and that is all that matters! God has created and blessed a path for me and I will find it and make it because I can overcome this!

Physical Tools For Myasthenics

Part of having MG means that you will have periods of fatigue that you will not be able to always overcome. You want to try to plan ahead to prevent complete exhaustion by creating tools and methods to leverage time that you are strongest to get you through each day, event and situation.

TOOLS

I have bought a bidet. It is most helpful for your fine motor movement and cleaning yourself. Moreover I also bought a shower handle and shower stool. This quite a bit when I just want to relax and take my time. Am I capable of a regular shower heck yea but do I enjoy sitting in my shower and using my shower wand attachment, you better believe it. It massages too. It feels great on my neck, shoulders, calves, and feet.

Toothpaste squeeze-rollers are awesome too give your fingers a break too. Jar openers and bag carriers. These things have become my life line. I can do these things but they help me exert far less energy that I can put toward other things, which will make my life much easier when I decide to have a baby later.

Collapsible bins, foldable/ collapsible water bottles, foldable chair, and poncho will help in moments when you feel weak and need to sit or get out of the elements.

My favorite is rolling bins, lol. They come in different types wicker, metal, plastic. I can store things in them, on them, and use them as seat or a table when I need to.

Find the type of day you are strongest for me that is NOT the morning but for many MGers it is. I am strongest in the middle toward the end afternoon. I plan my biggest events then. When you are weak that knowledge comes in handy because this is also when you probably want to run errands, eat your bigger meals, and do chores.

MG as autoimmune?- Hilarious Moments

Some health professionals still do not see MG as being an autoimmune disorder. However it is defined as an autoimmune neuromuscular disease…We do have a weakened immune system. Moreover, with the medication that we take our immune systems become even more compromised. I was someone who never got sick before this disorder. I have found that I am more susceptible to colds and flu now than I use to be. It is quite annoying. It is so bad that I have to wear a mask at work during cold and flu season to help prevent getting sick. I also avoid large crowds during this time of year such as going to church and sometimes packed restaurants because people tend to be more closely seated and if they are sick and ‘hacking’ everywhere I am likely to get it.

I have become something of a germ fighter, LOL. I have been hospitalized due to how severely my body breaks down after getting the flu and I cannot take the flu shots. I got the flu shots the first year after being diagnosed and it put me in the ICU. So no more of that. I have just learned I cannot do hospitals when I am healthy or be around kids.

I also prefer not to go places like this where I will have to wear my mask because people are ignorant!!! They step away from you as if you are contagious when I am trying to prevent myself from getting sick because they are coughing uncontrollably. The following things have been said to me while wearing my mask during cold and flu season at my job ( and not by people who were my friends):

 “I hope you get better soon”- I say you too…because I am not ‘sick’ in that nature and you shouldn’t assume so especially when we work at an Asian company (based in the US) and you guys travel there often and know they wear masks based on air qual

“Watch out for ebola over there!“- Seriously why would you make a comment like that when you have no idea why I am wearing a mask.

Why would you come to work if you could get sick?– Well just like an ADA law you cannot tell someone they cannot come to work if they can be accommodated and still do their job. However, why would come to work if could get in a car accident?

How long do you have to wear that thing?– Well it’s a mask and until cold and flu season is over…as you’re coughing and your nose is running in my face…

You should draw a face on your mask because we can’t see your expressions!– Believe me you don’t need to see my expression, it would give away the dumb look I have that says you are an idiot! After wearing them for 3+ months I had to learn to stop muttering under my breath and stop making certain faces since I no longer had a mask to hide behind.

Do you wear the same mask everyday? No I have a disposable sterile masks because that is sanitary other wise is defeats the purpose.

Will you have to wear again next year?– Yes for the millionth time yes! I explained this when you asked about the mask in the first place when you were trying to gauge if you should run and realized I was safe. I will have it on each year during this time unless I find another job where there are less people to interact with on a daily basis.

I will tell you I can laugh now but when this was going on I was very self-conscious and my husband was livid! I wonder how I will feel next year! I think I will have some quips ready!

Anxiety and MG

I thought that once my doctor diagnosed me with MG that would be the end of my worries, that this would tell me everything about me and they would be able to ‘fix’ everything or maintain everything with medication. Boy was I wrong. My anxiety went through the roof. I knew I struggled with anxiety all my life but I did not know in what terms or how serious. I had seen court ordered psychologists and psychiatrists when I was in grade school to deal with coping without my biological parents after being placed to live with my great aunt and uncle. However, they were the best things in my life. My anxiety lay with the questions that were not being asked. They lay with the situations that had not been observed that I could not explain fully until now.

I have gotten to the point now that there are days that only my mother (my great aunt) can touch me. I feel so bad for my husband sometimes. It’s not his fault and I know it but anyone else makes my skin crawl including my own touch. I don’t want to be talked too sometimes. These are weird times because I was always a snuggle, touchy, feely, person. I also feel bad because he is so patient with me and the medication I am on is unforgiving. It causes mood swings and I find myself having to do more apologizing that I care to do some days. It is truly a humbling experience.

Many days I find myself feeling as if I am in a dream world and it can be a bit scary and I have to snap out it. As if I am not who I really am. Most of these feelings come after huge/ dramatic changes in my life. But I have not been able to shake this and I know logically it has to do with my MG but you cannot tell that to my anxiety, LOL.

These panic attacks that I continue to have are unreal. They come out of nowhere. They are about anything and nothing at all. They range from small things like I cannot get this hair out of my eye an obsessing over it and almost breaking down to I am going to die soon and I do not have children and I am so under-accomplished (forget my bachelor’s degree and 2 master’s degrees-1 in psychology, lol) and so many other things I am working toward. I have to breathe and get it together because I begin to cry and and wear myself out and with MG that is never good because then my symptoms are exacerbated and then the real panic gets triggered!

The plus for me is that I have plenty of people who are supportive who talk me DOWN and are patient like both of my moms, my husband, and my friends. I also have my music, my games, workouts, books, art, and spas to dissociate when I need an escape. These have been my lifesaver. Well that and the discovery channel, LOL. Blogging has also been my new love lately to add to my collection of support and dissociation.

Healing and Escapes

music and water

We all need to find what works but as with every disorder, illness, and bit of stress we encounter we have to find a way to ease the pain or symptoms. Typically we can soothe the beast with with dissociation. I find that by calming the spirit or the mind with music or water is most helpful.

Water is known to have a so many healing properties and that is why there are spas everywhere but you do not need to spend loads of money to enjoy a spa experience. Even the sound of water such as a waterfall or stream is said to have therapeutic effects. We use water to reduce inflammation, increase circulation, and hydrate our bodies. Yet I use water to feel like I am flying. I have been a swimmer for as long as I can remember and I combine swimming and music now with my underwater music devices and now I swim longer even my scuba or snorkel gear and wish I could live underwater. I am weightless and it gives my joints and body relief and allows me mental freedom to just float and let all my stress float away as well.

Music also has healing properties. It has the power to make us feel! We can feel sad from a song about a lost love to happy about new love. We can feel inspired to keep trying not only through the music but by the words that are used in such an elegant and poetic way with the seamlessness of the music. You have to be selective though because music can make you feel…and that includes like I stated sad, angry, or negative. I use my music to push through a workout and to heal my soul when I feel at my lowest point. It helps to inspire me and uplift me. I tend to listen to a lot of neosoul, contemporary gospel, and upbeat R&B with a mix of Latin/ reggaeton at times. I LOVE to sing and dance, LOL.

There are also other outlets such as arts and crafts,  that I participate in like crocheting, painting, and creating pottery. I also enjoy online gaming with friends and my husband. In addition, hanging out with family and friends helps ease my stress as I have an outlet to eat and be merry. It’s always good to have good times and hang out and not talk about “your disorder” and just enjoy life.

Find your healing and escape, we all need one sometimes!

Experts and MG

There are not that many people out there that give advice on MG so if you can see and Expert that is amazing. I have had the chance to do that once and since then have not been able to be schedule since he is such busy man. Dr. James F. Howard, Jr.  has written several articles and journals on MG as well as done an extensive amount of research in the field. He is a professor at the University of North Carolina. I had several tests with him. I am ready to go back so that he is able to re-test me and run a battery of other tests on me. If you get a chance to meet him and see him his insights and help is invaluable. He and my neurologists communicate at will. If you in states and especially in North Carolina check him out. He has written journals for the Myasthenia Gravis Foundation for America, Inc. found here and in my opinion he is worth traveling for check him out here.