Sum Sum Summertime! How to deal with the heat when you have MS.

DealWithHeat

A few weeks ago, my family and I traveled out to Chamberlain, SD to do some fishing. What was the first thing I checked? The weather. No one wants to be out on a boat fishing for 6 hours when it’s raining. Luckily, there was no rain in the forecast. BUT we were going to be out on the river in 90-100 degree heat – for real people, it was HOT!

When you have MS, you never know what the day is going to bring. It couldn’t be more true than during the summer! Many people with MS have their symptoms exacerbated by the heat of summer. Buy how should you deal with it?

  1. If at all possible, do not go outside. But who wants to enjoy the beautiful summer months indoors? So let’s say limit the amount of time you spend outdoors.
  2. Wear light layers. If there is a nice breeze, you want to be able to feel that against your skin. That will help to keep you cool.
  3. Bring water with you. This will be helpful to keep you hydrated or to pour over your skin to cool your core down. Maybe even carry a rag that you can dampen and place on the back of your neck.
  4. Like #3, go somewhere where you can get in the water. I was a lifeguard at a pool the summer I had my first attack and the next 3 summers. It was a great perk to be able to get in and cool off when I was on break.

During your time in the sun and the time after your exposure, you are probably going to feel some fatigue. That is totally normal and ok! It is just your body’s way of telling you “Maybe that was a little much. Let’s take it down next time.” Read this article here to find more information about how ok it is to be tired when you have MS.

Do you have any other ideas on how to deal with the heat when you have MS? Comment! I would love to get some new ideas.

Upping my green thumb game

CGPlantSale

This weekend, I plan to attend Central Garden’s Annual Plant Sale.

I have heard so many good things about the sale, and am almost ready to start planning my home landscaping. I also have a pot or two to freshen up, and what better way than to speak with some local gardeners and help out a non-profit at the same time?

What is the plant sale?

Hundreds of perennials are donated from local gardeners and from Central Gardens itself that are all very reasonably priced. In addition to being able to buy these plants, attendees can also mingle with many vendors who sell garden-related items, many of which are handcrafted.

There is also a treasure trove of used garden-related items for sale at a very low price. Plus, we have master gardeners available to answer questions, educational information shared by experts in their areas, children’s activities, and free coffee and goodies available. And, all guests can enter their name for a drawing of a piece of pottery.

When is the plant sale?

This year’s plant sale is Saturday May 21, 2016 from 8 am to noon. Admission is free.

I have been told that you want to be there early before all the good ones are gone!

For more information, visit Central Garden’s webpage.

– L

Start of a Journey…

I want to start this post with the fact that a person is not defined by whatever ailments they have. I am not the girl with MS. My name is Laura, and I have MS. But I am so many more things. I have been describe as creative, funny, friendly (although maybe too brutally honest at times).

But yes, one defining quality I have is that I do have multiple sclerosis.

For those who do not know (I was you 9 years ago), here is what Multiple Sclerosis is, as defined on the National MS Society’s page:

“Multiple sclerosis (MS) involves an immune-mediated process in which an abnormal response of the body’s immune system is directed against the central nervous system (CNS), which is made up of the brain, spinal cord and optic nerves. The exact antigen — or target that the immune cells are sensitized to attack — remains unknown, which is why MS is considered by many experts to be “immune-mediated” rather than “autoimmune.”

  • Within the CNS, the immune system attacks myelin — the fatty substance that surrounds and insulates the nerve fibers — as well as the nerve fibers themselves.
  • The damaged myelin forms scar tissue (sclerosis), which gives the disease its name.
  • When any part of the myelin sheath or nerve fiber is damaged or destroyed, nerve impulses traveling to and from the brain and spinal cord are distorted or interrupted, producing a wide variety of symptoms.
  • The disease is thought to be triggered in a genetically susceptible individual by a combination of one or more environmental factors.
  • People with MS typically experience one of four disease courses, which can be mild, moderate or severe.”

So to help you understand a little more, here is how I like to explain what is going on to those who don’t completely understand medical jargon:

MS is a disease where your white blood cells go on the attack in your body and attack you myelin.

Your nerves are like electrical wire. The wire is contained in a sheathing of sorts just like your nerves are contained in a sheathing which is called myelin. When this is damaged, your nerves can start to, for lack of a better scenario, short circut and not all the signals get to where they are supposed to go.

When the myelin is altered/destroyed, scar tissue forms. These are sometimes referred to as sclerosis or lesions. When you go in form MRIs and the like, these are the bits they are looking for for diagnosis. Depending of your MS course, these can shrink or even disappear over time.

I can’t feel my skin…

The summer of 2007 started off like normal. I was working my first year as a head guard at the local aquatic center and love it! Was meeting new people, teaching swimming lessons, learning a management style…

Then one morning, I woke up with a numbness in my left foot. Weird, I thought, but maybe it’s just asleep. My limbs are notorious for falling asleep. But, it didn’t go away through out the day.

By the next day, it had spread to my other foot and eventually up both legs, into my torso, to my chest and to both of my hands. What was wrong?

It eventually go so bad that I had a panic attack in the shower one evening, and my mom rushed me to the ER. (She was great to rush from home to the condo to calm me down.)

After a small series of blood tests and spinal taps, they had a set an appointment with a neurologist. From there, I had multiple MRIs, CAT scans, EDGs and other blood tests. I honestly felt like a lab rat and had the prick marks and bruises to prove it. Sidenote: I will say that the lab techs did great – sometimes I just bruise easily.

They found a few lesions on my brain and diagnosed me with clinically isolated syndrome only for the fact that I had only had one attack and they didn’t want to label it on my medical record unless it was actually MS.

You have MS…

I thought I was doing well and was in my second year at Waldorf College. They had pumped my full of steroids to make the attack (or episode as some call it) go away. I was feeling better and thought maybe that was it.

But in December of 2008, I began feeling as though my calf and side were severely bruised – but only when it they hit the cold walls or frame of my bed. And in the shower, those spaces felt like the water was scalding and was going to burn.

We called my neurologist at Mayo and had an appointment right away.

We had had the discussion previously that I had all the signs, but this was when were going to diagnose…you have MS.

I had wished that day wouldn’t ever come.

MS is not a death sentence…

…but for all I knew at the time, it was…

My vocal professor was the only person I knew with MS. He was wheelchair bound, couldn’t sing as well or play the piano as well any more… What was I going to do?

I hadn’t even been able to start a career in graphic design and was freaking out…my hands weren’t going to work any more. My vision was going to go.

I wish I had found out about the MS Society a little sooner just for the fact of the communities that can help you cope. But, I did it for myself. I prayed for strength in the battle and a positive attitude, both of which I am blessed to have.

Just because I have this disease does not mean that I can’t do what I love. I did have to push myself for a while to remember that I don’t have to take this diagnosis laying down. Just do what you can for as long as you can I told myself.

And I am doing just that!

If you are struggling with your diagnosis, be it of MS or any other disease, I urge you to find a community to connect with. Or find a friend that will listen to all your complaints. Cry. Scream. Do whatever you need to make yourself realize that a diagnosis is not the end of the world… it is just the beginning of a journey…