What caused this?

The two comments that I get the most when other's find out that I have Multiple Sclerosis are. . .

1)     What caused it, is it hereditary?
2)     But, you look so good still!

The second comment I reply, "Why thank you!"  The first question I have no idea the answer to.  It has been proven that MS is not passed down to your children and it not hereditary.  What causes one person over another to be inflicted with this disease is still a mystery. 

There are two different theories as to what causes Multiple Sclerosis.  The first is a lack of vitamin D, which is best absorbed by the UVB rays given off by sunlight in a person's body.  The second theory is that a persons risk of getting MS increases if they had infections in the past.  Epstein-Barr virus increases your risk by two or three fold. 

My mom has told me a story about how I became so sick when I was 18 months old, she really thought she was going to loose me.  She said I was healthy, no fever, no cough or any other symptoms that would have led her to believe that I was getting sick.  Then one day at 10:00 AM I started having diarrhea and throwing up.  She said I was not able to keep anything down.  This continued for a few hours and showed no signs of stopping, so she brought me into the emergency room.  They told her that it was just a virus and that she should just take me back home and push liquids as much as she could.  We got back home and it continued to get worse.  I would turn my head when she would try and get me to drink liquid and I continued to get sick.  She finally got a wash rag and I would suck the water off of that.  The vomiting finally stopped, but now my diarrhea was like water.  She could not get it to stop and I was not looking like myself any longer.

Something was defiantly wrong and my mom was not going to let this go any longer.  She went back up to the emergency room with me and this was now around 6:00 PM.  She saw another doctor and they told my mom again, this is just a virus.  She told them she was not leaving until they did something.  She told them that she was there earlier in the day so they went back and looked at what the other doctor said about my earlier visit.  They came back in the room and said that I had lost 1/5 of my weight in 8 hours.  This might not sound like much, but was significant in a baby that only weighed 20 lbs.  They advised her to take me to Children's hospital.

My mom came home with me and packed a bag to go to the hospital.  She got in the car with me in the front seat and my biological father driving, yes you could do this back in the day!.  She was so afraid she was loosing her baby.  She said my eyes were sunken in I would toss my head back and forth saying, "Wa, Wa Monte, Wa, Wa, Monte."  She remembers having me in pajama's and she had a shirt on. She said by the time they got to the hospital she was soaking wet from the diarrhea.

The doctors got me into a room after my mom screamed at them and told them they needed to hurry up.  They said that I was severely dehydrated and they needed to start an IV right away.  This was not an easy task however because my veins were so hidden from being dehydrated.  They tried my arms and my hands and could not get an IV going.  They told my mom they were going to try my heel next and if that didn't work they were going to go in through my head.  They made everyone leave the room while they were able to start the IV in my heel.  I wouldn't stay still so they tied me down with ace bandages so that I couldn't move.  The doctors didn't want me pulling the IV out that they worked so hard to get in.

My mom came back into the room and saw her baby tied down and started yelling at them asking them what the hell was going on.  They told her that they didn't have enough nurses on staff to hold me and that I wasn't staying still.  My mom said I will hold her!!  They brought in a rocking chair and my mom held me the entire night, tight my her side so that the IV stayed in place. 

By noon the following day I was beginning to look like the old Susie with fat cheeks and eyes that came back to life.  It was my moms determination and motherly instinct that something was wrong that kept me alive today.  They kept me for observation for 5 days after that to make sure that I was not going to become dehydrated again.  My mom never left my side during those 5 days except once to take a shower.  She continued to hold me for the entire visit.

Sometimes I wonder if that is what caused me to be diagnosed with Multiple Sclerosis.  Out of the two theories that I have seen mentioned above, infection seems to be the only logical reason.  I know as a kid I was outside in the sun a lot and before my diagnosis I was a sun worshipper.  The hotter the better and I used to love to be outside baking in the sun!  My mom cant remember if they ever did classify the "Virus" they told her that I had when I was a baby so she cant be certain if it was the Epstein-Barr virus, or what exactly made me so dehydrated. 

So to answer the question of this blog post. . . . I have no idea, but would love to research it more!
  

Outraged

I was sitting in the checkout line with my daughter in the cart reading the headlines on the silly gossip magazines.  I can’t remember which magazine it was on, but there was a picture of Ann Romney in the lower right hand corner and below it, it read. . .

“Battling MS and why this campaign will kill her!”

I said out loud, “You have to be kidding me!”  Makayla looked up at me and said, “What momma?”  I just shook my head and changed the subject.

How irresponsible for the reporters to put such a headline on the cover of a magazine in order to sell the story.  Stress is a major trigger for flare ups for people that have MS and I can only imagine the stress that this campaign is going to have on her body.  I don’t believe this stress will kill her.  Mrs. Romney was diagnosed with MS in 1998.  I am pretty sure she has ways that she manages her stress levels and whatever else her triggers are.

I have never been so thankful that my daughter can’t read.  Yes, she is only 2 years old, but I am very open with my kids and the fact that I have Multiple Sclerosis.  I don’t hide my symptoms from them and I don’t conceal my shots if they walk in the bathroom while I am doing an injection.  I’m not sure if they realize what is going on, but as they get older we will continue to have conversations with them about MS.  I want to make sure that they are well informed so that when they see a bogus headline like the one about Mrs. Romney and MS ‘Killing’ her they will know better and be just as outraged as I was!

A delicate balance

I am so happy that the weather is cooling off and I am able to go outside without the fear of a flare – up.  Summer used to be my favorite time of year.  I couldn’t wait until we hit the triple digits so I could be outside and sweat!  Well, time has changed and I have a new favorite season.  I love fall!  The leaves are changing to the most beautiful colors, the birds are flying south and it is time to open the house up for the fresh air.  It is time to get outside and make up for all those days that I had to stay in because it was too warm for me. 

Apple orchards, petting zoos, pumpkin patches and yard work (the jumping in the piles of leafs part); I can’t wait for it.  I feel like I need to make the most out of this time that I have right now before those white flakes are blowing around and we are stuck inside again.  

One of the best ways to stay healthy while battling multiple sclerosis is to stay active.  I just read an article about a woman who was diagnosed with MS when she was 53 years old.  She told her husband that she was not going to let this disease ruin her life.  She vowed to have a dinner party every Sunday for an entire year.  She did it, inviting a different group of people each week!  This is amazing and I am not sure how she did it.  I love throwing a party especially if it involves me making food for my guests, but by the end of the evening I am exhausted.  I feel my body shutting down and I can’t get into bed fast enough once I put the kids down.  I am not sure how she was able to do this week after week for an entire year, but I admire her for it.

Now the tough part. . . How do I balance it all?  I have so many things that I want to do this fall, but I need to realize that I have limits.  I want to stay as active as possible so I can battle MS.  I have started my Zumba workouts again now that it is easier for me to stay cool while doing them and that makes me feel so much better.  It also gives me a good excuse to splurge and eat ice cream.  

All this being said I have booked my families Saturday’s from now until October 27^th with one Sunday event planned.  We can rest on the other Sunday’s where we don’t have plans.

This is going to be a great fall!!

Connections campaign

The MS society will be having a booth at the Minnesota State Fair!!  For all that know me this is the biggest event that my family goes to at least once a year.  We get there when it opens up, have a hot dog for breakfast at the same booth by the Como entrance in front of the coliseum and stay until the moon rises and the food booths start to close.  We eat our way all around the fair, stopping in to all of the buildings and exhibits and then eat a little bit more!

The MS society has started a campaign to raise awareness for MS and titled it “Connections”.  MS kills the connection between the affected person’s brain and the rest of their body.  They are fighting back by making more connections to raise understanding about this disease thru knowledge, fundraising and awareness on this disease.  The MS society has asked us to write a little something for their booth that shows how we have found “Connections” because of MS.  They want people to write something whether they are affected by MS or have a friend or family member and show how they have made “Connections” because of this disease.  



My connection came when my friends and family participated in MS Walk Twin Cities 2012.  I started our walk team “Susie’s Stars” in February 2011 and scrambled a team together and tried to raise as much money as possible.  Our team had 18 people that participated and we raised $1,296.50 for the MS Society.  Here is our team photo from 2011.

Being more prepared we started organizing earlier for the walk in 2012.  I was able to connect with my community thru local newspapers as well as a segment featuring me and my team on WCCO Saturday morning news.  More friends and family were committed to helping me make this year better than last.  Our team grew to 64 walkers and we raised $5,587.50 for the MS Society.  Here is our team photo from 2012.

I can’t wait to make even more connections for MS Walk 2013!


If you want to send in your “Connections” story you can e-mail it to jenna.washnieski@nmss.org
She wants these short so just a few sentences.

Follow up appointment with Dr. Masood

My visit with the neurologist, Dr. Masood, yesterday went well.  First he went over the results from my neurological testing that I had done with Dr. Morgan.  He said my memory is not much far off from other 32 year old females have measured at.  He said when they did the testing they can tell that I am find it hard to think of words to say sometimes.  I find this to be the biggest hurdle lately.  I can look at an appliance in the kitchen, I can tell you that you that it gets very hot and you put things in it to cook or bake, but sometimes I find it hard to come up with the word that it is called. . .

Oven! 

He said I also have some troubles with my left hand, but that comes with having MS.  Since I am right handed I can expect my left to not work as well, but in patients with MS it can be even harder for them.

Dr. Masood told me that this is nothing that he is worried about and I therefore, should not be worried about it either.  He said it is not to the point where he thinks he has to treat me for any memory issues, but it is nice now that we have this base line in case we have to do this test in the future.  I thought to myself, you are out of your mind if you think I am doing that terrible test again!  I would only go through that again if it was absolutely necessary.

I have had several people; doctors, family and friends, as me if I am depressed.  I told Dr. Masood that I feel good, I am not down, I am active and I don’t feel depressed.  I asked him if there is any way that I could be “Depressed” clinically, but still feel OK.  He drew me a diagram and explained to me how depression works in MS patients.  This is the best part of Dr. Masood is that he is always drawing me pictures so that I can better understand.  He showed me a brain with four lesions, two on each side.  He said let’s say this is your brain and this is the number of lesions you have.  Your brain has all the rest of this space to compensate for those 4 lesions.  Then he drew several more dots showing a person who has lots of lesions.  He said these is so much scarring in the brain with this many that your brain is not able to compensate and that is why some people with MS would need to go on medication for their depression.  He said my MRI looked more like the first brain he drew with just a few lesions.  He said I am doing very well for a person with MS.  He said if I was depressed I would not be getting up for work every morning, eating well, exercising, doing activities that make life enjoyable; all of which I am currently doing.  He reminded me that I need to stay active.  He said MS reacts to people that sit on the couch or in bed all day long and are not active.  He said as long as I am staying healthy and active and on my current treatment I can keep MS at bay.

Dr. Masood then pulled up the results from the MRI that I had and he said there is minimal changes in the plaques on my brain from the initial MRI that they did back in 2009 which led to my initial diagnosis.  He said that is great news and he is happy with the current treatment that I am on, Copaxone.  Then came the sad face and he asked me, “This is good news!  What is wrong?”  I whined and said so that means I have to keep doing these damn shots every night?  He said things could be a lot worse.  Some diabetics have to give themselves 4 shots a day!  He said there is a pill currently out, Gilenya that is being used as a treatment for MS.  However, insurance will not cover this pill unless the patient has already tried the injections and they have failed to work.  He said he is happy with how the Copaxone is working for me and he wants me to continue on that.  “OK. . .”  I said reluctantly.

He is sending me out for blood work to make sure my liver is still in good condition and then wants to see me back every year.

I am thankful that I have been able to keep my MS in check and not let it consume my life.  It is undoubtedly something that is always in the back of my head, but I am able to not let it take over and consume my everyday living.  Now if this summer would just cool down a little bit so I can take my kids outside to play!!!

Ways to help. . .

I have had a lot of people ask me what they could do to help since I received my MS diagnosis.  I feel very fortunate that I have not had to depend on a lot of help so far.  I am sure down the road this will change, but I am not worrying about that now! 

I have become "Friends" with a woman on facebook who runs a page titled "Positive Living with MS" and it is a place where she can give us uplifting messages or we can get advice from other people that have MS.  Recently she posted this and I am so glad that she put into words some of the things that I was thinking.

Here is the post. . .

Ways to Help a Friend with Multiple Sclerosis

by Positive Living with MS on Wednesday, July 11, 2012 at 7:22pm ·

1. Don’t forget they are sick! Get well cards and gifts dry up pretty quickly when you have Multiple Sclerosis, but you don’t get better and unless a hospital stay is needed, it’s easy for everyone to forget that their friend is still ill. If you know that someone with MS is dealing with a flare up or is depressed or just because, send them a card or a gift – it’s doesn’t have to be much! Just the thought will make their day.
2. It’s likely that they will be unwilling to ask for help, but will still need it. If you want to help out, try not to ask “What can I do?” which either invites the answer “oh nothing” or means thought is needed. Instead, think of something you would be prepared to do and ask “Is it okay if I do ______ for you?”.
3. Be easy going guests if you go visit. Don’t expect entertainment, but also be prepared to do things if wanted. Knowing that a guest isn’t bothered whether we go out for the day (it can be nice to take advantage of having someone there to go places you wouldn’t go alone) or whether they read a book or do the housework is fantastic. It takes the stress away.
4. If the person with Multiple Sclerosis has a baby, children or even a dog, ask if they would like a break sometimes. You may not even have to take the children/dog out – just having someone prepared to come round and look after them can mean a decent nap or a long bath can be taken.
5. If you live locally, easy meals in Tupperware containers dropped off at the house can be a lifesaver…especially if you don’t need the container straight away so it can be frozen. Just make sure you know what they can and cannot eat beforehand! 
6. Be flexible and never make them feel guilty about things they cannot do. Multiple Sclerosis does not give schedules of flare ups or unexpected issues. We do not know in advance how we will be feeling.
7. Ask, “Do you have an errand I can run for you before coming over?”
8. "No matter how little you have, you can always give some of it away.” ~Catherine Marshall. Just listen... until it hurts to not say anything. And then listen some more. People with MS usually have a lot to get off their chests and often feel they can’t burden the people around them. Let them know they can talk to you and you’ll listen.
9. Understand that they live in a constant state of making decisions for which there is no guarantee they are making the right choice.
10. Educate yourself. Look up Multiple Sclerosis online and if they are having new treatments, try to learn a little about them. It helps to not have to explain every little thing and may well make you understand a lot better. Just remember that not everything you read will be true, unbiased and completely up-to-date and that by the time you have a firm diagnosis, many MS people are experts in their own condition. Don’t use your knowledge to try and correct them – they may simply be more up-to-date with research than whatever you read. 
11. Don’t tell them about your brother’s niece’s cousin’s best friend who tried a cure for the same illness and... (you know the rest).
12. Don’t pester them to try something you read or heard about and think might help. If you really think it might help, send them a newspaper clipping or email them the article and leave it to them to decide whether to follow it up or not. 
13. Simple acts of kindness like holding the door open (they can be very heavy!) are lovely.
14. Never say “maybe you’re not that sick after all”, “it can’t hurt that much”, “you just have a low pain threshold” or minimise or trivialise the symptoms in any way.  if we are showing pain, then it’s almost certainly a LOT of pain, not us making a fuss over nothing.
15. Temporary illnesses and injuries can help you to understand what a person with Multiple Sclerosis goes through, but it is never the same. We have symptoms that never ever go away and no one without MS can ever truly understand that. Be careful with simple throw-away phrases like “I know just what you mean” – you probably don’t! If you truly think you get tired or hurt like we do, then there must be something wrong with you! 
16. See if there is any way you can enable them to do a loved hobby that their illness restricts. They may be an enthusiastic gardener who can’t dig or move a wheelbarrow or they may be a seamstress who can’t cut a straight line anymore. If by simple acts you can enable them to continue doing something they love, do it! It’ll be better than any gift. 
17. Never assume they cannot do something without asking. It may be that it is something they can do on a good day and would like to, or that for them it is worth having to spend days resting before and afterwards.
18. Don’t not invite them to things because you don’t think they’ll be able to come. Having Multiple Sclerosis is isolating enough without feeling like you’ve been forgotten about completely.
19. Buy them a gift of a favorite magazine subscription. Having Multiple Sclerosis can be truly tedious at times, especially as you may not be able to get out to get things like magazines or may not be able to afford them.
20. Ask what time of day is good for calls or visits. They may have a nap schedule they need to keep to or they may know that at certain times of day they’ll feel worse and won’t be up to polite conversation. 
21. Never tease someone about how long they spend in the bathroom…don’t even mention it. If they’re taking a long time or going frequently, it’s because they need to!
22. If they have to stop work or receive disability benefits never say “well, aren’t you lucky. I’d love to sit on the sofa all day and get money for it”. Most people with Multiple Sclerosis would dearly love to be able to work and be independent… and sitting on the sofa soon gets very frustrating if that’s really all you can do.
23. If your friend misses a special event in your life, don’t be grumpy about it. Call and ask if you can bring some photos over and tell them all about it. Let them know that they are still a special person to them and you want them to be part of your life even if they couldn’t be there on the day.
24. If you’re coming for a visit or even just to go out somewhere, call and check it’s still okay before you leave.
25. Recognise that pain and extreme tiredness can make anyone irritable (have you never snapped at someone when you’re sick with flu?) and that various medications can affect behaviour. If your friend does or says something rude or hurtful, give them the benefit of the doubt. They may well be horrified afterwards.
26. If they need to cry, let them and just be there for them. Never say “don’t cry” or “this isn’t worth crying about”… it obviously is to them!

So if you were every wondering what you could do with someone who has MS or really has any debilitating disease now you know. 

Brain appointment results

I heard back from Dr. Morgan, he is the one that did the neurological assessment testing a few weeks ago.  I won’t see my neurologist until the middle of July so I asked him to call me when the results of the test were in so I could see how I did and would have to wait so long until my next appointment.  Well, good news!!  He said that my test scores compared with other people in my age group were not much different.  He said that I have some mild memory loss, but nothing that he would be concerned about.  He told me that after speaking with me and then going through the tests he can see that I have came up with some great coping skills to help me with my day to day life.  He encouraged me that I have a very busy life and some of this could be due to that. 


I asked him about that MMI test, just because some of the questions were a little odd.  He said that came back normal as well.  He said that was testing to see if I had any other underlying issues going on like depression or any other mental concerns.  That is one thing that could factor into my memory loss.  He assured me that everything looked great and that if I had any other questions come up in the meantime I could address those with my neurologist at my appointment in July.

A part of me is wondering if this is all in my head then.  How could it be though when my husband agrees that my memory is not what it used to be?  Maybe I don’t need all the answers though.  I am doing a great job at work, my family is healthy and happy so I think I just need to live life and roll with the punches that come along the way.



 

I have a few lingering questions for my neurologist that I will ask him at my next appointment, but I will put those on paper so I don’t forget  and move on from this.  I have my post-it’s handy and my husband doesn’t mind hearing the same stories from me over and over.     

More on the brain appointment

I am so glad that I am done with that neurological assessment.  I would rather them do something painful then to have to go through that again.  I started out with Dr. Morgan and he asked me some questions about my background, education, family life and work.  He told me that I have a very busy life already and that could very well have something to do with the problems that I am having.  I thought to myself, it really isn't that much different then a lot of other working mom's that I know. . .  He had me look at a drawing and copy it while looking at it.  Then he tested my hand dexterity to see how fast I could put little key shaped pegs in a puzzle with first my right hand and then my left.  Next he gave me a blank sheet of paper and told me to draw from memory what I just copied earlier.  "Oh boy, so this is how it is going to go."  I did the best I could, but got no feedback from the doctor.

Then he turned on a tape of a man saying numbers out loud.  I had to add the two numbers together in my head as he kept going and going and going.  I got through that OK, but then he started talking faster.  He told me if I got lost to just pause and jump in when I could.  I hate to say it, but I got lost quite a few times.  I began feeling frustrated.  He told me that this testing was going to push me to my limits and that no one that comes in is able to do everything 100%.  That put me at ease a little.

Dr. Morgan then informed me that he was hading me off to his assistant and he was going to work with me for the next 2 hours.  After that then I was going to take the MMPI (I believe that was the initials) which is a personality test at the very end.  He walked me over to another office down the hall.

The next man, I cant remember his name, had me look at some pictures and tell him what was missing.  The first few were very simple, but then they got harder.  I looked at a few of them and saw nothing missing.  I asked him, "Is this a trick question?"  The only feedback he ever gave me was to say no.  We got to the end of the book and he said, "That was a warm up so you know how things will go in here.  There are no trick puzzles or questions.  Things in the beginning of each exercise will be easy and then it will get harder at the end."  OK I thought so straight forward and no tricks!

I cant remember the order of things, but he had me do some drawing exercises after looking at a picture for a few seconds.  Then he would list off a bunch of words and have me repeat as much as I could back to him.  He did this 5 times in a row.  The worst part was he never said, "Yes, correct, good job."  He just sat stone faced looking at me so I couldn't even get a hint if I was correct or not.  Then he had me go back and draw the pictures that I drew an hour ago by memory.  WHAT!!  I did 3 that I could remember, but I had no idea what the 4th drawing was. 

Half way through I saw Kleenex on the desk and almost lost it.  I kept asking myself if I was getting these right or if I was completely blowing it?  I graduated from high school as well as college and now I cant remember a simple damn list of words.  The tears were bubbling up in my eyes and I told him that I had to go use the bathroom.  He said that was just fine to take breaks and told me where to go to find the restroom.  He told me to take my time and find my way back to his office.  I wondered if this was another test to remember where I was so I made note of how to get back without asking for help.  I collected myself in the bathroom and got back to his office.

We got right back into it.  He told me a few stories and told me to retell them to him using as many of the exact words that he did that I could remember.  He kept asking me, "Anything more?"  He said he was doing that so he made sure I got everything out that I could, but it was just irritating me because I had to say No.  More numbers, letters, drawings, definitions, questions, patterns, what comes next in a sequence.  Then he really dropped the bomb.  He said, "Now going back to the list that I repeated to you 5 times, tell me as many words as you can remember from that list." 

"Are you fu$#ing kidding me."  was the though in my head.  I did as many as I could.  Finally he handed me some blocks that had colors on them and I had to copy the puzzle that was on a card.  The first couple were easy, but the last one I couldn't get for the longest time so he just took them from me.  With my head pounding he finally said that we were done and I could start working on the MMPI test.  I was never so relieved to be done with something in my life.  The test was 350 true and false questions and was tedious.

I got in my car closed my eyes and wished to just go home and think about nothing.  I could feel the 'Brain Fog" coming on earlier then usual for me.  To bad it was Friday and traffic was terrible.

Now its the weekend and I am thankful for that.  Dr. Morgan told me that he would score everything and give the results to my neurologist.  I told him that my appointment with him wont be until the middle of July.  He told me I could call him later next week if I wanted to get the results earlier.  I will be doing that and update you.
 

Brain fog and tomorrow's appointment

Tomorrow is my “Brain” appointment.  My neurologist is concerned about my memory problems and we are trying to get to the bottom of what is happening.  He set me up with an MRI scan and this brain appointment at my last visit with him.  I called about the results from my MRI and was told there are minimal changes from my first scan that I had in 2009.  Then I was asked by a friend if I ever had my thyroid gland checked because that could cause some of the symptoms that I have been having.  I haven’t so I called into my doctor and had them check it.  It was a simple blood test and I had the results back the next day.  That came back normal as well.  I was going to cancel this next appointment if something showed up on the scan or with my thyroid, but since it didn’t I am going ahead with it.

“I feel like I have to remember more 

now for the both of us.”  

That was the response that Reuben gave me when I asked him if he turned off the television after we left the house the other day.  I find myself second guessing and verifying things more often now.  Before I start a story with someone I usually ask, “Have I told you this before?”  I have started putting reminders in my phone and setting an alarm to go off so that I will remember different things.  I have post-it notes in my car, my office and magnetic note pads on our fridge at home that I utilize often. 

I read an article on brain fog as it relates to MS patients.  It feels like you have this information in your brain somewhere, but you just can put it into words or remember the details of something.  I can feel my brain “Fogging” up when I get too warm, stressed or after a long day.  I don’t want to say that this happens when I get tired, because I am not tired as in I need to fall asleep.  If you see me in the late afternoon into the evening and I am staring off into space the brain fog has kicked in.  Some people mistake this as something is wrong or I am sleepy, but I just need to rest my body and my brain at this point.  My neurologist told me that I need to slow down and try not to do so much all the time.  This can be hard especially when the summer is so short and you want to make memories with your family and friends.  This is going to be a work in progress for me.  I like to be busy, but at the end of a busy day I can really feel the effects that it is having on me.

This appointment tomorrow is at the Minneapolis Clinic of Neurology in Golden Valley.  I have never been to this location before, but this is where the doctor is located that does the testing.  I have to be at my appointment at 11:15 AM and they told me that it will take around 4 hours!  They advised me to bring a lunch because it can be a long day.  I am not sure exactly what this test is going to involve.  They told me that they are trying to find out why my memory is failing me.  A shorter version of this test is often done to diagnose Alzheimer’s or dementia in patients.  My neurologist is going to try and figure out if this is a symptom of my MS or if something else is going on in this crazy body of mine that we might be able to reverse.  

Explaining the effects of MS to kids

Children love to be outside.  I think my kids would spend all day out there if we could.  They can run free and not worry about making too much noise.  They can expend energy that I wish I still had as an adult, an adult living with MS that causes fatigue.  Ayden got a new bike recently and he love riding it around our cul-de-sac.  He loves throwing the ball around with either his dad or me, playing basketball, T-ball or helping Reuben cut the grass with his toy lawn mower.  Makayla’s favorite thing to do is play with sidewalk chalk.  She can sit there for a while and be in her own little world drawing on the ground.  She especially loves it when the other kids in the neighborhood come over.  She gives them hugs and shares her chalk.  Makayla also likes to play sports with her brother, even if she swings with the bat upside down.

That is why the conversation that we had with my son last night was so hard.  The weather is getting hot and he wanted to go outside when we got home from work and picked them up from daycare.  This was how the conversation went. .

Reuben:           “Ayden we can’t always go outside when we get home from daycare.  Mommy has MS and when it is too hot out she gets sick from the heat.  So if Daddy is busy and it is to hot outside then we won’t be able to play out there because you don’t want Mommy to get sick do you?” 

Ayden:             “Yes!”

Reuben:           “No Ayden we don’t want Mommy to get sick and if she stays outside and gets to hot then she will get sick.  We don’t want that do we?”

Ayden:             “No, we don’t want that.”

Reuben:           “OK, so you understand that if Daddy is busy and it is too warm to go outside then we need to play inside.  You are too young to be out there playing by yourself, OK.”

Ayden:             “OK, but can I ride my bike today?”

A part of me wanted to cry, but this is my reality and I don’t want him to think that it is a bad thing that is going on.  I try to get outside with the kids as much as I can.  We are outside in the dead of winter with all our gear on as long as it isn’t too cold.  This can even be tricky at times.  Often I get too hot so I wear layers that are easy to shed off as I find myself getting warm. 

How do you tell your children that it is too hot to go outside?  How do you tell them, I understand it is sunny and blue skies and all your friends are outside playing, but we need to stay inside?  Kids understand the concept of it being too cold outside, but too warm. . . .  There is no such thing to a child.


 

Water is my friend during the hot weather months.  I found a fan that is connected to a water bottle that I keep filled with water and a few ice cubes when I know I am going to be outside.  Our house is also a fan of Popsicles.  I keep the freezer stocked in the summer because that way it cools me from the inside.  Both do a lot to keep me cool, but on some days nothing helps and I have to be stuck inside.


This morning I got the kiddos ready and we were heading out into the garage to get in the van to go to daycare.  I opened the door and the heat had already started.  Here is the conversation that occurred between Ayden and I. . .

Me:                  “Wow, it is hot out here already!”

Ayden:             “Mommy, are you going to get sick?”

I had to catch my breath when he asked me this.  My 4 year old little man understood what we were talking about yesterday on the way home. 

Me:                  I hugged him the biggest hug and said, “Oh buddy, it’s not too hot out right now so Mommy will be OK, I love you.”


When I left work it was warm out, but I could feel a little bit of a breeze.  I figured I better take advantage of today since the heat index will be in the 100's this weekend.  I picked the kids up and we played outside and stayed as cool as possible with water and Popsicles.  It doesn't get any better than this!!