Rainbows but no Unicorns

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So yesterday I had the strange symptom of the rainbows again. I thought I had traced it to not eating properly during my workday. Maybe it also has to do with proper hydration too because yesterday I am positive I had eaten enough. I did however miss my water routine yesterday for the first time in weeks. I saw the rainbows around the lights around dinner time. I know this is also a symptom of being tired as well but as soon as I ate a bit and got a bit of water in me it went away 30 min or so later.

I have talked with my neurologist about this and he has not really had any thoughts about it yet besides checking my trough levels of cell cept and making sure it is doing its job since it takes 2 years to begin doing it’s full job. If it is not he wants to switch me to something else like imuran. We will see.

I wish with this symptom it was something better to report like rainbows accompanied with unicorns! Rainbows are usually a good sign, lol. It gives me a bit of anxiety because lately I have been having more ocular symptoms than anything else. In the past it was swallowing/ vocal issues. However, I don’t mind the change up as much, it just takes so getting use to as I depend on my sight so much and have to rest my eyes more now by taking cat naps or just sit in the dark.

I have to wear shades more often, even on cloudy days, and I have to come away from the computer and my books more often which I have yet to do. I need to create schedule breaks to do that! We will see how that goes, lol.

MISGUIDED: PET PEEVES or ANXIETY?

pet-peeves-emily-mcdowell

I always use to say that my biggest pet peeve was ignorant people who were intentionally ignorant! Which in other words means that they are in some way obnoxious. These are the people who could easily go and help themselves to the answer by opening the book in front of them, or listen to what the teacher just said and have the answer we all just heard but they ask a question just just answered, or they blurt out something ignorant instead of observing something when the answer may come if they were just patient.

However, I realized that maybe this is simply part of my anxiety as well. You always hear the phrase my educators that there are NO STUPID QUESTIONS! Weeeeeell, as my mother may say (who was an educator, there may be if you TRY! LOL. I have been around people who I believe their life goal is to see how far they can push me before I snap! I believe they can see an ANXIETY CASE from a mile away and they want to see how well I can contain myself. Though these people make my skin crawl and my brain will not calm down for several hours I still will not show it. The problem is I can contain myself very well, but the thoughts in my head start to sound something like this:

Male Client: Where are the towels?

ME: You me the the ones that you passed while getting dressed on the big 5’x 3′ rack with over 300 towels on it right by your gym bag?

In My Head: Open you friggin eyes, it’s U shaped with no obstructed view, it’s literally 3-6 feet from your bag in any direction, how the heck did you miss it, you have to pass it to go in and come out of the locker room! And the fact that you didn’t just go back in and look for instead of coming to me to ask says you show no initiative, I can’t go get it for you!

Stranger: Why are you sitting in that handicapped seat you don’t look handicapped?

ME: Many people who are disabled do not look like what they are going through.

In My Head: You rude jerk, you don’t look handicapped either but from that question you are obviously suffering from severe mental retardation your IQ is lowered than 5. And your empathy/ sympathy rates on the scale of nonexistent as my husband is standing to let me have the seat is 2 seconds from jumping down your throat had I not retorted in a satisfactory manner.

These are just some examples of what I mean when I cannot tell if I am dealing with anxiety or dealing with a pet peeve as they both give me the same feeling! It’s a harsh reality some days!

Migraine Preventor and Memory Loss

migraine fog

When you start losing everything you have to start looking at things as a sign to slow down and think! Take a mental inventory of everything each time I go somewhere. Do I have the basics? Do I need something more for this trip? I ran into this issue as I had to start upping the medication for my migraines as without reading the side effects memory loss began to be an issue. I was worried at first that it was a side effect of MG. However, as I was already in the habit of creating to-do list because I love to see things get checked off them it only made it more fun for me each day to continue to make more.

The down side is making sure that surprise events do not screw up my routines. Surprise events include someone calling while I do my morning mental inventory to be sure I have all my things packed. Some people say do it the night before…the only problem with that is more people are active then, I get more phone calls then, my husband is home and I am more distracted. In the morning, it’s quiet and my husband is either sleep or gone for work already so I get that time to meditate and get things done.

Moreover, at this time period versus when I was first regulating to the increase in the dosage I know longer have the fogginess that was accompanied by the migraine medication (topiramate). That was the worst as I felt as if I was not fully awake and could not think clearly. Now I just grab a bit of chocolate or make sure my diet is very well-rounded and some good exercise and it works pretty good. On the worst days I may have to snag some heavier caffeine like a soda (Dr. Pepper). But I feel as if I have mastered the preventative migraine meds. I pray I will not have to go off them when I decided to have a baby, lol.

It is the only thing that has helped after many trials over the last 4 years and being on different on the spots meds over the last 8+ years. I think we have a winner. Now if I could just help my husband remember things though he is not on any medications, LOL

Reinvent Yourself!

TRY

The time to reinvent yourself is when everyone doubts you, thinks you are unworthy, and that you are nobody! This is the time that when you become Brand NEW and they say it you can say yes, Yes I am, take it or leave it!

Misdiagnosis? Could There Be More?

So I have been doing a lot of reading, researching, and connecting with people with MG and have found that what my doctor initially told me about MG is not the whole story!  was originally told that it generally targets women in their 30 decade and men over 60. I was also told that it is not hereditary and there is no genetic predisposition that scientists know of. Moreover, there is nothing that I have done (or not done) that could have contributed to getting this disorder. In other words I wasn’t too active or sedentary or ate to badly or anything like that. Though I am quite healthy and active and was when diagnosed as well.

However, during my research, reading, and networking, I have found a lot of this to be contradictory. I thought at first maybe I was finding the exceptions to the rule, but then I was finding these people to be more the norm. I believe that there are a great many people that are simply not diagnosed, or not put into the system (like mayoclinic). Furthermore, I believe that many people are misdiagnosed because things like muscle weakness are a vague sign of so many disorders that doctors tend to jump to other issues before thinking of this disorder. It it the silent and little known disorder. It seems more reasonable to say M.S. which is well known, anemia, cerebral palsy, meningitis, and so on. Some are short term and curable, while others are chronic, long-term, and incurable.

During my searches I learned that many people I spoke with, there were people were diagnosed at ages well below that of what the doctor and the online sources quoted me. These people were 9-18 years of age. Moreover, on a rare occasion a few had more than one person in their families with the disorder which was amazing. I have only a grandmother with M.S. which was even amazing to my neurologist. They even found it more amazing that many of the women in my family suffer from severe migraines and take serious medication for them.

They say that the disorder is a 1 in 10,000 chance of obtaining it but it seems when I am online, in treatment, or other places that more and more people have it than that. I’m not sure if there is a proper census on MG right now. Maybe the more information on it and less stigma associated with it will help people come forward and help gain accurate numbers worldwide. I speak with many people worldwide on Dailystrength.com though I am not sure if they all enter in to the mayoclinic database or not I believe they are still entered into some national database. I Hope.

But we have to do better on the consistency on the MG information and what is being told to patients. The information is so basic that we are to believe that this is what is suppose to be right even when we are the abnormal cases in that situation. LIKE ME! They will still feed you the basic information which almost makes the doctor sound like a robot as if they do not know more about the disorder. It makes you feel uncomfortable as if you should run…

Cooking and MG

Cooking is one of those things that we all say we either love or hate doing, can or cannot do! But I can do it and I love it when I create something that fills my belly and tastes amazing it makes me want to cook something else. Even if I just ate just to eat it for later, LOL. The problem is that with MG I struggle to make certain dishes especially baking dishes because it can require a lot of mixing and mashing. I end up not being able to be as authentic as I would like and that can taint ‘clean’ my dish is. I like to cook healthy and I like to know what is going into my food. Though I do not always garden my dad does sometimes and so do some friends and they give us fresh veggies and fruits at times.

THE PROBLEM

With MG repetitive motions cause extreme fatigue and results in what I call the dead muscle syndrome. I end up with a muscle that was used too much unable to be used again for hours and sometimes not properly for days. If it was my hand or wrist I am in trouble because then I cannot properly use it for a days at a time and your hands are needed for quite a lot of things aren’t they. I struggle to open drinks, cars, put on my clothes, push up on things, pull the seat belt, do my hair, brush my teeth, and the list goes on. My hand begins to tremble just trying to hold carrot.

THE SOLUTION

I have bought more tools to help me. Many people buy tools they never use in their kitchen because they either do not cook often or they just do not use them. I on the other hand have no choice if I am to be able to function in normal life. I want to have it all. So my mom heard my cry when I said I was going to buy a mixer and beat me to the punch, lol. She bought me a new blender and a food processor. I can hardly wait for it to get here. I already have the ingredients for a no bake peanut butter pie!

Next few things on the menu with be some dips, hummus, and stuffed meats! YUM!

Selective Memory Effect

Have you ever had friends or family that remember everything? What about the person that only remembers the things that are important or relevant to them? We call that selective memory. They pick and choose what they want to concentrate on hard enough to remember or what they wanted to focus hard enough on to store into their memory in the first place.

I tend to find selective memory a good and bad thing. However, it can be quite annoying. My disorder for the most part does not leave my physically disfigured so people forget I have it. Therefore instead of asking if I am able to do things they assume I can still do them just as I could before I was developed it. If I am feeling strong I will and pretend that I do not, which may be a mistake because in their mind they may think the illness is cured. However, If I say something they look at me as if I am lying some days or as if I gave them new information. It is amazing some days. I get so annoyed when I explain the same thing over and over to some people, especially family.

These are the people that even if you did just say ‘Google’ it coldly like you would a stranger or associate, you would probably not get much further and you would also then have to deal with a flood of emotions because they are family.

On the other hand there are times that I want people to forget. Times when I want to be treated normal again and feel as if I did before having a disorder. My immediate family is good at remembering I have a disorder but when I am well allowing me to be me and just letting me be. I love it! There are friends too that as long as I explain to them if I am feeling weak they respond but otherwise they treat me like normal as well. They see me as being able to do whatever I am willing to do unless I say otherwise. I love it. These people let me have my cake and eat it too! It eases my anxiety to be around these people. They are like water to my soul and if you read my blog at all you know I love water and I love to swim and just be around the healing properties of water. I look forward to Sundays with my family and planned trips to see my friends and events with them.

Weird People Make the World Go Round

weird

When I was about 14 years old starting high school, I once asked my Dad’s Cousin a question…This question I fully expected to be answered a certain way because this may I deeply trusted, respected, loved, and enjoyed his visits, so naturally I wanted him to say what I wanted to hear!!! My question,

“Am I weird?”

His response after a momentary pause to reflect…

“Yes”

I was taken aback, hurt, and confused! A million thoughts flooded my head and I began to immediately feel insecure, but before I could shy away, he began to speak again.

“You see my dear, how many people want to look inside someones mouth everyday?”

I stared at him strangely but continued to listen…

“Who wants to put their hands in their mouths and play with their tongues and reach into a stranger’s mouth?”

I must have looked more confused like a small puppy with my head cocked to the side as I sat still but I was determined I was going to get his riddle. I figured he was challenging my brain as he always did when he came. I enjoyed his brain teasers though I felt this was ill-timed because I did just ask him if I was weird and I was not sure if the answer was still wrapped in this riddle or if he was trying to distract. He was masterful at both. he continued…

“Who wants to shine a light into someones rear end all day?”

I smiled…he continued…

“You see, dentists and proctologists may be considered weird people by but they are necessary and they make the world go round”

I smiled even bigger now as I got his meaning, as he taught me to embrace my weirdness. He said the fact that my peers called me weird for the way I talked, dressed, acted, or the events I participated only made them boring and mundane and to make my life as weird I chose. The goal in life is not to be cookie cutter because that was not how God made us; as cookie cutter images!

SO BE WEIRD!!!

I NEED A FIX

fitness

SO I skipped my workout yesterday because I had the early shift at work and I had to open the facility. That means getting up at 4am. I like working out before my shift because it means I am usually less symptomatic from my MG and able to gauge how I will feel the rest of my day. However, on my opener day this cannot happen. I usually have to workout afterwards. But Yesterday being that this is the first week of working out in 7.5 months I am easing if you will back into. I say easing because some people who are not use to working out would not call my 12 mile bike rides on Tuesday and Wednesday easing back into working out.

However, when Midday Thursday came some symptoms decided they wanted to go haywire. I got double vision for no reason at all. I recently stated in a post that I was nervous that would not be able to tell the difference between MG fatigue and exercise fatigue and this was that day. I was easily able on Tuesday and Wednesday, but not yesterday. It alarmed me and made me feel like if I exercised I may have pushed the limit and caused more issues than I was willing to deal with such as being out of commission exercise wise for several days. Since I just got back into this that is the last thing I wanted. I also had several things I had to do yesterday afternoon and so I decided I would just go and run my errands anyway. Though By far I would not call my errand exercise (Even though I walked my butt off) I definitely felt it when I got home because I was up until nearly 11pm and had to get up at 5am.

I was so on edge yesterday afternoon from not having my workout and then being late to my friend’s special event that my anxiety went through the roof. My husband could not understand it. He has known me for now 5 years and still does not understand that my anxiety is a disorder. That is does not go away, that I control it as best I can but that it gets out of control sometimes and I try my best to control it all without medication because I hated being on the medication 15 years ago. It was for a short stent (less than 6 months) but they way I felt was horrible. So I figured I could combat it with exercise, meditation, music, and other soothing dissociations. I do pretty good until one triggers happen such as being late, rushing, money issues, car issues, being lost, or my anginophobia strikes. I feel bad for most anyone in my way then. I cannot help it. I do not really know the root of these issues fully I somewhat know where they stem from but my logical self cannot stop me from feeling the way I do and acting the way I feel.

What makes it worse is when those who do not understand say things like just calm down. Or it’s not that serious! You are overreacting. In hindsight I may know these things but I am usually embarrassed because someone witnessed my meltdown. My poor husband is getting better about dealing with it but he is still learning what not to say, and when not to say it, LOL. That’s hard enough with women but with a high anxiety woman BOY OH BOY! Thank goodness opposites attract and he is more laid back to fit my anxious life!

Today I do not care if my whole body tries to shut down I will workout! I will sit on a recumbent bike if I must and read a book and go at a snail’s pace and do it! I don’t care if I can only do it for 30 minutes. It’s better than nothing to help keep my anxiety down. I cannot function otherwise. My books, my exercise, my games, my dissociations are my FIX!