Monday, December 30, 2013

SUMMER HEAT CAN JUST ABOUT KILL US! We get fatigued, exhausted, symptomatic, and right down grumpy

Summer Is Upon Us...

It is the dog days of summer. It has arrived and there doesn't seem to be anything that we can do to change it.

Let's face it. SUMMER HEAT CAN JUST ABOUT KILL US! We get fatigued, exhausted, symptomatic, and right down grumpy.

For me, I love summer. I love the heat and I'm from Texas! Colder months cause me to be in pain more then the summer. I know a lot of you are going " huh?"

Don't get me wrong. There have been days when I've been out in the heat and I start having a " mini flare ", legs get weak, I feel like my brain got fried except for the yolk and its milky fog which is my brain. I walk into things more often, ( darn doorway moved on me again ) Oops. I forgot there was a step there or at least one if my legs did. All I want is my air conditioning, my bed and 10 hrs of sleep.

Eat lots of water soluble foods and fruits. Watermelon, oranges, salads. When we are having fun in the sun we tend to not eat as often. I always have a cooler full of fruit, and some form of a cold pasta salad that is quick carb energy. When I feel hungry, I eat. Not snacking on fruits and such will allow your body to really get drained, quickly.

I've taken steps to make sure that I can have my summer fun. Why should we be deprived of something we love but often can't because its just too hot outside? Through many different resources and 25 yrs of trial and error.. I have learned what I can do to help me. I can't say it will help you , but I do hope these tips are helpful.

Make sure that you are hydrated 24/7. Drink more water then Gatorade. I personally drink smart water. When you are out in the heat make sure that you are drinking often as it will help keep your body temperature down from the inside, even if your hot on the outside.

Stay away from drinking things with a lot of caffeine because it acts as a diuretic.

There are TONS of different types of clothing that is designed for MS patient to stay cool. The have shirts, vests, neckties, wrist bands, etcetera. They do help. They help regulate your body temperature from going up. I use to carry a cooler full of ice so that I could just dip them in and keep cool.

Wear a hat. I often wet mine down in a sink full of ice and it helps  keep the sun from beating down on your head directly. It helped keep me..that's right.. Cooler. A little tip. Take an ice pack and keep it up in your groin area and that works well for fevers too.

I am fortunate that I am not but five minutes to the lake. I love how the sun makes me feel, but I am always in the water. It keeps my body temperature down and is also a wonderful way to get some easy exercises done in the process. If you don't live near a lake, look online or in the phone book to see where you community pool is. It's very cheap to go. I pay $ 2.00 to use the pool. I use water to my advantage!

I know the heat can be a real pain in the arse. I can relate to the frustrations of not doing anything in the summer. It's a real drag. But try some of these and get out and have some summer fun!

See ya there

Tuesday, July 2, 2013

And they say: "BUT YOU LOOK SO GOOD!!!"

And they say....

You know that awkward moment when you take out an entire display at a store, or fall on an escalator at the mall, and the moment has arrived when we feel we not only need to apologize, but explain to that person.. I have Multiple Sclerosis. We start to cringe on the inside because you know your ears are about to be assaulted with those dreaded words......

BUT YOU LOOK SO GOOD!!! REALLY?? I just took out a display of basketballs, and I look good? Is this a common occurrence? I see stuff like that happen myself or I actually am the one who took it out and I think to. Was that not an indicator that not all is right in " Denmark ." ?

Those few words erupt like a volcano inside of us. I personally have thought to myself.. If one more person tells me how good I look I will hit them upside of their head and get to ask.. Think much?

I think there are a number of reasons why this is an automatic response when you tell them. Got to give them kudos for being ignorant.  * Clap, * Clap!

Explanation of ignorance. Off topic.. But not really..

( The usual second response that I get is. " You don't wear a brace?" Umm.. " Your back doesn't look curved. " News flash I do not have scoliosis.. My favorite one, hands down is. " You don't look like one of Jerry's kids. " HUH??? Wrong again DOLT! Wrong disease. Ding ding! )

I feel that people who say these nasty words don't do it to be hurtful. They just don't know what to say. We can't fault them for that as we have done the same when it come to a conversations of diseases. And let's face it.. Even we have had to pick our jaws up from the floor. We couldn't imagine going through what they have and been going through.

Multiple Sclerosis shows its disabilities in different ways. Some have a more outward form of MS, like myself I am one that shows very little on the outside but struggle with what is going on inside.

That was the old me.

I guess I stopped caring about what people thought or said. I pity the poor person who says this to me on a bad day because that person is going to have to park and try and keep up with me. I know their brains are playing ping pong with itself after that! You said those pesky little words and now you get to hear it all.

Then you have the " rarity " DENSE PERSON " who says it just so they don't have to talk to you about it. These people get a very special clap. Not worth the time. Move on.

We can't continue living with the expectation that the people we tell are going to say the right thing. Through experience I have learned by asking them if they know what it is. Most people have someone either in their family who has it or a friend. It's amazing when we find the voice to stand up and say " I may look good but I feel like crap. " People listen, if we don't get offended by these little pesky words. People are even grateful for the tips.

I've been able to pass my knowledge on and help non MS'ers to understand a very complicated disease. When we do this we are giving them power and knowledge so they don't go to the " hit upset the head pile."


Friday, June 28, 2013


Dear Stan,

Hi! My name is Tina and I have been diagnosed with Multiple Sclerosis since I was 18 years old, and Fibromyalgia for 7 years.

Looking back, it all happened so fast. It started on December 30th a Friday. I was at work ( waitress ) and every time I bent over I would just fall. I thought " great " I'm getting the flu. It was that time of year. I mentioned to my then boyfriend how strange I felt, and thought that was the end. Nope. I woke up the and had this unbelievable weight feeling all over my body, I could not stand up. For sure... I had some weird flu. By that evening my speech was slurred, the right side of my face didn't move when I wanted it to, and I felt a tingling on my right side. Sunday wake up and I had no feeling on my right side and my left I had no coordination and the painful tingle feeling. It was New Years Eve and I didn't want to call my Dr, so I just slept hoping that the strange flu would go away. Monday woke up and I'm paralyzed. Called my Dr and he had me go to the E.R right away. I was flown by helicopter to the nearest hospital that had an MRI scan. That was fun! NOT!! When I returned back to the original hospital my Dr had results of MS. We of course did other tests to help confirm it such as spinal tap and blood work. But we also excluded any other possibilities. I remember being happy knowing what was wrong with me and that I was not dying.

Reality set in. I had no idea what MS was. I didn't know what my future would hold. My Dr got me in touch with the MS society but back then there were no treatments. I was sent to a center for people to reside and start the journey of physical, occupational and speech therapy. Most can relate when I say all of these things are wonderful for us, but also so frustrating! We want immediate results. That doesn't happen in reality.

So my journey began. And what a horrific, wonderful journey it has been!

I'm sure y'all get " BUT YOU LOOK SO GOOD " when you tell people, and if any of you are like me... You want to hit someone up side their head and say " I bet that felt good! Yes, I have had many of those rotten feelings.

No one ever told me that being diagnosed with a chronic illness that it wasn't a death sentence to living a happy life. I thought I would have to settle. I'm 42 years old, I have a brilliant 18 yr old son, an awesome husband and the love and support of my family. I have lost friendships, family members who couldn't understand what I was going through and so their way was to ignore it and me.

I have felt alone in which I cannot describe. My dear MS friends can though. I have never wanted pity, or sympathy, just empathy. To understand that pain is pain, that I'm not drunk, I am just having a bad day. There are no magic pills that the Dr can give us to make us feel better let alone those around us.

I'm no longer on a conventional MS treatment as I ran out of options. The new ones kind of scare me.

But I am happy to say that I am healthy, happy and living my life. In 2012 I no longer wanted to live. I was in a wheelchair or using aides to help me get around, I lost my independence completely. My husband had to stop working in the corporate world and work from home to take care of me, there was not a day that I did not have severe pain. I would just lay in bed a sob. I am now on all natural nutrients and I have not had pain in 6 months.

Today I can say " I WIN . "

Thank you Stan for giving us all that you do. I'm very proud to be a Stan's Angel!

Hugs and love,