No I don't want a hug

Seeing as I haven't blogged here for a while....I thought I should.

Today I was introduced to MSHug, WOW that was painful. MSHug is a tightness in your chest, it can happen anywhere from below your rib cage down to your waist and has been know to occur as far up as your neck. It feels like something has grabbed a hold of your chest/body part (in this area) and is squeezing. Thank goodness this only lasted a few seconds while we were at lunch.

The fatigue is still prevalent. Man I could really use a nap in the middle of the day, but that is not likely to happen. :) Besides headaches, dizziness and balance issues everything is GREAT! LOL

I can say I am happy with the cooler weather coming on, because this helps eliminate some of the fatigue, even though it is still there. I just can not deal with extreme cold and extreme heat. The Myoclonus is still here...yah!! I am noticing it more and boy does it hurt to try and control it when I am in public. I already get the odd looks if I happen to stumble...I promise I have not been drinking!!! Could you image adding in twitching with that.

I have my next appointment with my Neurologist in January, so we will see if there are any changes. It seems as each day, month go by...I feel worse, but I am trying to keep positive and fight this stupid disease.

This is your brain on MS

Let me start this by saying this is not my brain image. The processes of getting my records is well, tedious and I wanted to update my blog prior to having to wait. So, I have "borrowed" an image from the internet and hope that I do not get sued. :)

So, the doctor's appointment was pretty boring for the most part, but we did find 2 more lesions. **note: let me preface this by saying I am not a doctor nor do I play one on tv** I choose to educate myself on this stupid disease so that I am aware of what is happening to me. The first lesion (upper left region) is located close (really) close to the frontal lobe. For those who are interested, your frontal lobe controls "planning, emotional control center and home of your personality, motor functions, problem solving, memory..etc you can read more here. So, my doctor and I agreed that it was a good thing it wasn't there. BUT it is VERY close. :( Now this is what is causing my myoclonus, which is basically involuntary twitching. I noticed a few months ago that my left arm and neck would jerk randomly. (think when your eye twitches).

Next, in the lower right corner of the picture is another small lesion in the Occipital Lobe which processes visual data. So naturally my doctor questioned me about vision problems. Which I have had none (that I recall). I do get the squiggly lines in my vision, but those have been there for years and my eye doctor told me it was from having dry eyes and a stigma. Now occasionally I see (what seems like) movement in my peripheral vision (so maybe I see dead people) who knows. :) So, we are keeping an eye (sorry for the pun) on that lesion.

So whats all this mean. Well, in my doctor's mine he wanted to put me on a steroid treatment right away and I basically told him "NO"! He agrees that these symptoms could go away by themselves and that is what we are going to do. Now he did prescribe me clonazepam; this medicine is an anti-seizure med to help stop the muscle jerks. (so far so good). So now is a waiting game to make sure it works and the lesion disappear. I have another appointment in about 6 months follow another MRI to see that there are no more lesions and that these lesions have gone away. I will keep you updated.

1st MRI of 2011

I had my first MRI of 2011. Will not know any results until later. I really hate MRI's. They have to drug me up on Zanex (Xanex) to stick me in this tight tube for 2 hours listening to pinging and banging noises. Just so they can look at my brain. Then I have to wait for any information from my doctor, so I just have to sit and wait. Are there more lesions, are there less? Where are they, are they causing my fatigue, pain, numbness or memory loss??

No matter what, I just continue to live my life day by day. I am not a religious person but I always rely on the statement that: "god does not give you anything you can not handle." This disease has taught me patience and strong will. No matter how much someone tries to understand, unless you have to live with this, you never will. So, just because you see a smile on my face, does not mean I am doing okay. My mother has taught me to hide my feelings, because lets face it, most people do not care "how you really are."

I worry everyday that I will wake up and not be able to walk or see or hear or talk. Will I be able to write or communicate? What will people think if I have to start walking with a cane? I don't want people to feel sorry for me, I just want understanding. Not everyone with this disease is feeble. Just because I can't remember a word, or a name doesn't make me stupid. I don't want to see pity and I don't want to be ignored due to ignorance on someone else's part. I am me and I will ALWAYS be me.

On a lighter subject I am totally going to try and get a copy of my MRI. I will totally post it here, look for the title: "This is your brain on MS" :)

Geez time flies....

When your having fun.

Went and spent our New Years at a friends house and had an awesome time. It's always good to be able to spend time and relax with friends. Jeff and his "pimp" hat made their debut. (rolling eyes as I type this. LOL) But all in all good times were had by all.

My mom was out of town visiting my brother in Georgia, so when went off to Jeff's parents house for Christmas. We unfortunately had to leave the dog behind and we were welcomed with a Christmas Morning picture of her from our Friends. (thanks guys :) ). I love spending anytime out there with his parents. I get the best rest and am the most relax when we are out there.

All and all everything seem to be going okay. Just now getting over a cold (or whatever you want to call it). Some coughy (I know, not a real word) thing. Still coughing, but feeling better. Went to see the MS doc on Monday, and had my anemia checked due to dizziness and falling. But was told it looks good. I am getting scheduled for an MRI sometime this coming week due to Myoclonus become more prevalent. They thought it was from my anemia, but since my numbers are good, they think there could be more lesions. Oh well we will see.

I wonder if I can get a copy of my MRI sent to me so I can post it??? HMMM!! I am totally going to ask my Doc. :)

New Chapter

Sometimes it is hard to restart, but when the time comes you know it. I have decided to start over with the weight loss plan. I have a dress that I need to fit into before October for a friends wedding. It is not like I have gobs of weight or inches to lose to fit into it, but it is the principle of it. It’s about feeling good about yourself and being able to walk with your head up.

I discovered about a month ago the Anti-Anxiety medication I was on was causing me to gain weight and to not be able to lose it. When I discovered this, I was extremely upset. I had recently started an exercise regime about 2 months ago, P90X. You would think that all the work that was being put into this routine, I would have lost at least 1 pound. I did not lose anything. Nothing. Nada. This was extremely frustrating and caused me to stop. Now that I have been off of the medication for about 2 weeks, I have already dropped 9 pounds!!! Talk about validation and encouragement. So since it is the beginning of the month and I know that I can do this, I will be starting back on P90X and watching what I eat. I am excited about what this new page in my life will be bringing and encourage by the weight lose to know that I can do this.

There are other crossroads in my life I am also working on. It is time to take a look and focus more on getting bills paid off, instead of just walking around with my head in the clouds. It’s also time to purge my life of all the clutter, weather its people or things. I have started distancing myself from the bad vibes and realizing there is no need to be so negative about situations or other people. Also the house purge will begin. I have discovered and decided (realized) that you can’t take anything with you once you are gone, so why do we live our lives for things? Anything that can be sold, will be sold. Anything that can be donated with be donated. Anything that needs to be thrown away will be thrown away. I mean I took a serious, critical look around my house and discovered that I have things that I don’t even like. Why? I asked myself. Why? I believe freeing myself from such clutter will help regenerate my life, my soul.

I am so excited about this new chapter that I am starting and can not wait to begin on my journey!!

Sorrow

I came to terms with this disease years ago. I knew that hours, days, weeks would come that I would not be able to do certain things. But it still hurts. I spent the evening with some friends at a BBQ and some swimming, got to sleep in this morning, yet I feel like I have been hit my a freight train. I really need to get off this couch and just do anything, but I can't.

When something major happens is your life you go through stages. (Denial, Anger, Bargaining, Depression, & finally Acceptance.) I have been through these, I feel like I may have skipped some. Anger, depression and acceptance I remember. There was no denial, there was just too much "proof". I feel like I have been bargaining for years on a daily basis with this disease. There is so much stuff to do and so little time to do it, it seems. I feel bad when I can't do things with friends or family and I feel like I miss out on so much. Maybe I will get off this couch sometime today.

I'm EXHAUSTED!!!

When someone asks me how I feel, it really just depends on the time of day. It is hard to describe to someone what you go through on a regular daily basis. I found this story years ago and I like to share it with others when they try to understand just how I am. I do not recall were it came from, but the story involves someone with Lupus, but anyone with a chronic disease can totally identify with this store.

THE SPOONS

My friend asked what it felt like, not physically, to be sick. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. I explained that the difference in being sick andbeing healthy is having to make choices, or to consciously think about things when the rest of the world doesn’t have to.

The healthy have the luxury of choice, a gift most people take for granted. Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire. For the most part, they do not need to worry about the effects of their actions.

I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else being incontrol.

I asked her to count her spoons: I explained that when you are healthy you expect to have a never-ending supply of "spoons". But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with.

She counted out 12 spoons. She laughed and said she wanted more. I said no. I’ve wanted more "spoons" for years and haven’t found a way yet to get more. I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus. I asked her to list off the tasks of her day, including the most simple; each one would cost her a spoon.

When she jumped right into getting ready for work I cut her off and took away a spoon. " No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can't take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too."

I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her a spoon, just for washing her hair and shaving herlegs. Reaching high and low that early in the morning could actually cost more than one spoon. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about.

I told her she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s "spoons", but just think how hard tomorrow will be with less "spoons".

You do not want to run low on "spoons", because you never know when you truly will need them. We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long.

She was forced to make choices and think about things differently. She had to choose not to run errands, so that she could eat dinner that night.

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I need to think about the weather, my temperature that day, and the whole day's plans before I can attack any one given thing.

It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count "spoons".

Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability orillness.