It's flu season again!

Well here we are all the way back around the calendar to flu season again! 

The flu is hitting the Houston area particularly hard this year with many reported cases of H1N1 and several confirmed deaths in the recent weeks.  This has sent folks into a panic, it seems.  The debates over the safety and the benefits (or lack there of) of the current vaccine are being waged on the news and in social media.  Here are the most recent recommendations from the National MS Society regarding the Flu Vaccine:

2013-2014 Seasonal Flu Vaccine (includes H1N1)

1

• The 2013-2014 seasonal influenza (flu) immunization is a single preparation that provides immunity to three different flu virus strains. It contains anH3N2 virus, an influenza B virus and this year’s H1N1 virus, which means that only one ‘shot’ is needed.
• The injectable flu vaccine, which is an ‘inactivated’ vaccine, is recommended for everyone over 6 months of age. It has been studied extensively in people with MS and is considered quite safe. The injectable flu vaccine may be taken by people who are taking an interferon medication, glatiramer acetate, mitoxantrone, natalizumab, fingolimod, teriflunomide, or dimethyl fumarate. Although there were early concerns that the vaccine might not be as effective in people taking natalizumab or fingolimod, data (Vagberg et al., 2012; Mehling et al., 2011) suggest that people taking those medications do mount an effective immune response to the vaccine. A recent study (Bar-Or et al., 2013) also confirmed the effectiveness of the vaccine in people taking teriflunomide. No similar study has been done to date with dimethyl fumarate; however, there is nothing about its mechanism of action that would interfere with the efficacy of the vaccine.  
• People who are experiencing a serious relapse that affects their ability to carry out activities of daily living should defer vaccination until 4-6 weeks after the onset of the relapse.
• FluMist® is a live-virus flu vaccine(sometimes called LAIV for "live attenuated influenza vaccine”) that is delivered via a nasal spray. This live-virus vaccine is not recommended for people with MS. Live, attenuated vaccines are those whose biological activity has been reduced so that their ability to cause disease has been weakened but not totally inactivated.
• A high-dose flu vaccine is available for people over age 65. This high-dose vaccine has not been studied in people with MS of any age. At present, the Centers for Disease Control is not recommending the high-dose vaccine over the seasonal flu vaccine for the general population.

The flu virus (like any other virus) can precipitate MS exacerbations, and people with limited mobility are more likely to develop complications of the flu, including pneumonia. The Society's National Medical Advisors recommend the seasonal flu shot as a safe and effective vaccination for people with MS.
Additional information about flu can be found at:
http://www.cdc.gov/flu
http://www.cdc.gov/flu/about/qa/1011season.htm
If you have any questions about the flu vaccine, contact the Society's Information Resource Center at 1-800-344-4867.

Reminders

Ahhhhhh, my memory has taken as bad a hit from MS, perhaps worse of a hit than my body!  I used to have a wonderful memory. I could remember nearly verbatim anything I had read and if I heard something I just needed to write it down once and I could retain it.  Now, at certain times during the day I can't even keep a thought long enough to carry on a simple conversation. It is always very frustrating and quite honestly often embarrassing as well.

Recently I decided that I would try to blog first thing in the morning because frankly it is when I am at my peak cognitively. I am well rested and my mental resources have not been taxed by anything yet. And by first thing in the morning I mean first thing! I'm still lying on bed as I write this! :) 

As I was about to start this post today on memory, in the morning (at the peak of my cognitive performance for the day, mind you), I was distracted by a muscle twitch. Not an unusual occurrence for me. Click here for post related to twitching.  So what do I do?  I promptly draft a post (see previous link)  about muscle twitch, save it, open my email and twenty minutes later remember I was supposed to be writing a post about memory this morning!!!! 

Obviously, because I am having problems with this I have had to and am continuing to develop strategies to help me cope.  Obviously, they don't always work ....... at least immediately. 

One thing I do is make lots of lists. If I think of something that I need to do, accomplish or purchase, I write it down, immediately  (for obvious reasons). I try to be consistent with this and have one particular notepad or device that I use so I'm not losing my list(s).  If I am using a hand written list I mark off anything completed immediately. If it gets too cluttered with scratch outs, I rewrite it because the clutter distracts me. 

As the day wears on and I become more fatigued both physically and mentally I have more difficulty even remembering to check a hand written list.  The afternoons are when I am thankful for technology. I am learning to use the reminder function on my smartphone more and more. It sends me a little jingle at a programmed time to remind me to check it. If I get something done with a single tap I can remove that task and the next one is moved into its place. If I don't get something taken care of on that day, it is automatically moved to the next day for me. 

Taking advantage of the technology available has been a life and sanity saver for me.....now if I can just keep up with my phone!

Twitching and Muscle Cramps Are No Fun!

As I am lying here in bed catching up on email, Twitter and Facebook I realize that I'm having a hard time focusing literally, but not because of my eyes this time. I'm laying on my side and my muscle in my back is twitching (not to be confused with twerking) making my entire body move up and down.  Twitching and muscle cramps are something I have had for years and years....long before I was diagnosed with Multiple Sclerosis.

I am pretty sure that they were related to MS, I just didn't realize I had it at the time.  Fortunately for me the twitching is not painful, only annoying and doesn't happen too often.  The muscle cramps in my feet are more predictable now.  I formerly would get them without warning.  They would attack me from out of nowhere and draw my feet up into a contorted arch.  These days they only try to do go into that extreme type of cramp when I wear a shoe with a heel.  Yes, sadly I have had to give up any type of cute high heel shoe.  It is a sacrifice I am willing to make to avoid that kind of pain. 

You can do it!

One of the positives for me that has come from being diagnosed (yes I said positives!) is that I am more willing to take chances or leaps of faith. I'm not talking about my spiritual life here but my everyday, the: Can I do this?; I'm not sure of the outcome or my ability, riddled with self doubt life. You know the one......where you pass up career opportunities or personal opportunities that seem too good to be true and you over analyze or self doubt yourself right out of it.

For someone who is now plagued with the additional questions of: Am I going to get too tired?  Are my legs going to work the whole time?  Will I be able to make a decision or retrieve the correct words? the fact that I am more willing to step outside "my box" is quite amazing to me.

My daughter invited me on a trip over the summer.   It was a spur of the moment trip.  That is something pretty unusual for both of us.  We are both planners.  I wonder where she gets it from?  We both, although I am sure I am more inclined to do it, usually have everything mapped out well in advance.  We do spontaneous things, but we plan for them.  :)

I wanted to talk myself out of it.   There are always excuses, right.

• How can I justify the expense?
• I'll be too tired to be any fun.  
• I can't leave the other kids because school is about to start.  I have supplies and clothes to shop for.  
• What will they eat?  

Yeah right!  They are teenagers, they will hunt down food like wild animals.  Besides I had already decided earlier in the summer I was not going to miss out on things anymore because I thought I might be too tired which is really what most of my anxiety stems from when you boil it down; that I will be too tired to physically or mentally to complete, well, just about everything.  I decided that I was not going to BE the obstacle, I was going to overcome my obstacles.

So off we set to the airport.

First obstacle:  Pre-filled Copaxone syringes on a plane.  I packed them in my carry-on because I didn't want them to somehow get lost in "luggage land" without me.  I can't run down to the drug store and pick up a few extra.  They come from a specialty pharmacy, are shipped overnight via
refrigerated carrier; and they cost a bazillion dollars which insurance would not cover to replace.  I was anticipating trouble but was pleasantly surprised.  As I waited with my shoes off to head into the scanner, I leaned over to the lady screening the bags, got her attention and gently tapped my suitcase and quietly said "I have medication in syringes in my bag."  She smiled and asked if there was any type of gel pack with them.  I replied that there was indeed a refrigerated pack to keep them cool (I hadn't even thought about that being an issue).  She shook her head and motioned me on through.  After I went through, she smiled and said, "Thank you for letting me know."  That was it, no problems whatsoever.  We put our shoes on, grabbed our bags and headed to the plane.

One obstacle that wasn't an obstacle down.



So within one week of mentioning it to me, my daughter and I both boarded a plane from Dallas to Los Angeles.  We did have hotel reservations but that was it.  We had no plan for what we were going to do while there and we had no reservation for a rental car or ride.  She had mentioned that she had done some research and we should use public transportation while we were there.  I laughed at her, literally.  I know people use public transportation but we don't generally.  We live in rural Texas.  Other than Greyhound there is no real public transportation.  She and I both have used buses and trains in Europe, but that was pre MS.  Pre having to be more prepared (in my mind anyway) for obstacles. 

We made it safely to our destination and bought ourselves a Metro Tap Card for $20.00 each and we rode the Metro Rail and buses all over Los Angeles!    Not only did I overcome self imposed obstacles but she overcame her fear of needles by very carefully (and after much encouragement and coaxing) administering my shot on two nights while we were on our trip.  It was a time for us to enjoy each other and both experience and see things we had never before.  What an awesome adventure with my daughter that I would have missed if I had worried about everything and talked myself out of going because of what "could" have happened.

 

 

Yep, I am finally doing it! The 30 Day Squat Challenge

Okay, I have finally given in!  I am doing the 30 Day Squat Challenge.  You know the one that made its way around social media last spring......Hey! Better late than never!  When this started going around Facebook last spring, I had numerous Facebook contacts who were participating and offering each other encouragement and accountability.  I wanted to try it then but was pretty sure that I could not keep up with the progressive nature of it at that time.  Sticking to one of my New Year's Resolutions however, I did do something.  I quietly and without any fan-fair began doing a few squats every day.  I think I actually started with five.  Over the summer I worked my way up to 25 every morning.  Now I can do those 25 without even blinking an eye so I decided it was time to start the actual challenge.   Exercise is so important to people with Multiple Sclerosis and aside from the physical limitations that may prevent us from performing certain exercises we also suffer from just plain lack of motivation!  Even though the "rush" of doing this challenge seems to have passed in my social media circles, hopefully there are a few of you out there that can keep me accountable and help me stick with it.  I am proud of myself for consistently working up to the point where I feel like I can even attempt it!  Anyone want to do it with me?

More Intriguing Information about Vitamin D

As you probably know by now, I am a big proponent of Vitamin D these days!  (If you don't know why Click here!)  I was just reading an article shared by Multiple Sclerosis Information on Facebook that just further enforces my beliefs!

The article is Researcher: Vitamin D Better Than Drugs in Treating MS.

The title sounds a pretty boastful based on the initial findings of the research presented in the article but regardless I firmly believe there is a strong correlation between MS and Vitamin D deficiency.   Based on how I feel when I am regularly on my Vitamin D regimen personally, I can confidently say there is a huge difference in my fatigue level.  While the Vitamin D does not eliminate fatigue for me I have had better results with it than a variety of alternative prescription solutions.  I personally take my Vitamin D in conjunction with Copaxone to help treat and manage my MS.

What are your thoughts on Vitamin D?

 

New Year's Resolution - Exercise More!

One of my New Year's Resolutions is to EXERCISE MORE!

This really should not be a difficult one for me to accomplish because pretty much if I exercise at all I will be doing more than I have been recently!

I have never been one that really enjoys "organized exercise".  I prefer to play a sport where I get exercise but am having fun, but also reaping the health benefits and I don't realize it!  :)

Now, while I am at a Soccer field for what seems like just about every waking moment, I get little to no health benefit from being a spectator.   To accomplish my goal I must actually move!

I was recently at a dinner where the topic was the benefit of exercise to a patient with MS.  With limitations on what we can do physically, sometimes it is a challenge to come up with an exercise routine that is both feasible and fun.

Initially after my diagnosis, once I was able to walk better, I enrolled in a Zumba class.  It sounded ambitious to me at the time but my daughter encouraged me and went with me while she was home on a school break.  I was not able to do all of the moves (especially at first).  However, as time went on, it helped me tremendously in regaining not only my strength, but balance and stamina as well.

As summer wore on, it became consistently too hot at the gym where the Zumba class was held and the risks outweighed the benefits, so I switched to water aerobics.  I loved it and was able to maintain a more consistent body temperature while exercising.  Water aerobics lasted through September (I think) and then with the rush of school starting and getting back into that routine any semblance of an exercise schedule for myself got left by the wayside!

My goal is to find several activities that I can do several times a week so that I neither get bored, nor physically strained.

My list for now consists of the following:

• Walking in the neighborhood (weather permitting).
• Zumba (at home on DVD, with my own thermostat!)
• Water aerobics when it resumes for the year.

What are you doing?

New Year's Resolution - Time Management

I have been doing pretty well with my time management goal lately.

However, I have realized I only have a certain amount of control over my own time. I can MANAGE all I want, but I am only able to carry out so much, regardless of what I have allotted for any particular time.  Even if I have allowed for rest, breaks, unforeseen circumstances, sometimes I am just not able to make it all work out the way I (originally) thought it should.

So really what my my resolution should be on this topic is to not be so hard on myself about not being able to do it all.

I recently skipped TWO soccer games.  One game each, of my son and one of my daughter.  Skipping a game is not something I do.  I make an effort to be at all of their events.  I am not able to always do this but I manage to get most of them.  These particular games were the same night in two different towns in opposite directions from each other.  On paper, I could have made it to the first half of my son's game and the last half of my daughter's game.  We had been to several games (preseason scrimmage) already that week.  The weather had been terrible - cold, windy and wet at all the previous games.  I was tired.  I should have been tired anyway and then the MS tired hit and hit hard.  I couldn't do a thing about it but stop!   That MS tired did not care a thing about what was written in my calendar.   I felt guilty and I felt sad that I was missing out on their games.

Funny thing is that the kids were fine.  They know I am their biggest fan, on and off the field.  When my son got home (he drives), he was surprised I hadn't been there.  He said, "I was pretty sure I saw you in the stands!"   We all had our usual post game talks about who did what, and how they felt about it, and what they needed to work on.  No one made me feel badly about me not being there but me!


So I am releasing the guilt!  I am going to keep trying and when I can't go anymore, well.... I will go to plan B, or C, or even better, no plan and just roll with it!  Everyone have a great day and just keep, keeping on!

Happy New Year! Are you making any changes this year?

New Year's is always a time for new beginnings!  My resolutions for this year are to:

• Enjoy more time with my kids and husband.

• Get more exercise.

• Improve my diet.

• Lose 5 pounds.

• Manage my time better.

• Manage my finances better.

Wish me luck and I wish you luck in all that you wish to accomplish!

Happy 2013!

Flu season is upon us!

Avoiding getting sick is a new hobby of mine.  My kiddos are older so this is easier now than it used to be.  Although, they are getting sick of  me, due to my constantly reminding them to wash their hands.  Of course, if you are around people you are going to be exposed to germs, so other than becoming a recluse, here are some suggestions from the CDC:

• Cover your nose and mouth with a tissue when you cough or sneeze. Throw the tissue in the trash after you use it.
• Wash your hands often with soap and water. If soap and water are not available, use an alcohol-based hand rub.
• Avoid touching your eyes, nose and mouth. Germs spread this way.
• Try to avoid close contact with sick people.
• If you are sick with flu-like illness, CDC recommends that you stay home for at least 24 hours after your fever is gone except to get medical care or for other necessities. (Your fever should be gone without the use of a fever-reducing medicine.)
• While sick, limit contact with others as much as possible to keep from infecting them.

I don't think I have ever taken the flu vaccine.  However, I am thinking about it this year.  I really don't like to be sick in general and a fever tends to affect my walking ability these days.  The National MS Society posted an article recently regarding which flu vaccine MS patients should take.  You can read it here.

In short the article states that MS patient's SHOULD take the INACTIVE VERSION in the shot form.  They should AVOID the FLUMIST.  The mist contains the live version of the virus and is NOT recommended for people with MS.

So shot, not mist, got it?  What's one more shot in the grand scheme of things, right?  (Yes, that is sarcasm.)

Have a great day and don't forget to wash your hands!

It's all in your head.....errrrr face!

Today is a PET PEEVE post! 

Aside from the obvious issues that we have to deal with fighting MS, such as the cognitive deficits that we have to compensate for, the walking troubles, dropping random things, etc  there are the weird skin sensations and pains!  Yes pains! 

Prior to being diagnosed with Multiple Sclerosis I would have bouts of odd "skin pain".  For months I had pain in my right hip/groin area that was excruciating.  It was painful for ANYTHING to touch me including the softest, lightest bed sheets.  The only thing that offered me any relief was to wear tight blue jeans.  I know, it sounds ridiculous but it helped.  I think because rather than any garment touching me in a specific spot in the painful area, it spread the "touch" over a wider area and made it more bearable.  No one could explain to me what it was or give me anything that could make it stop.  It made me begin to think I was crazy(er).  :)   I did try Lidoderm with limited success, but as with all of the other junk that comes with MS......it finally just went away.  (THANK GOD!)

So fast forward to yesterday.......The left side of my face and my scalp began to hurt.  The kind of hurt like you have had your hair up too long in a pony tail and finally let it down hurt.  Not comfortable but not the end of the world either.......only it doesn't go away after a few minutes.  It stays and seems to intensify.  It wakes you up when you turn over on your pillow at night.  It makes you wince when you brush your hair.  It brings you to tears to clean your face or put on makeup.  In general it just wears you down! 

I am hoping that this does not last months like the other did.  I am whiny when I am in pain and I hate to be whiny.  It makes everything else worse!   So if you see me with half a face of makeup you know why......or this week I can just play it off as my Halloween look!

Thanks for letting me vent!  I try to keep a positive outlook but sometimes I just need to let it out!

Cool As A Cucumber!

Yes, yes! I have ordered and received two shirts that are made with a relatively new material that activates a cooling sensation when moistened. I am super excited to try them!

In the meantime however I have discovered a wonderful little "evaporation towel" called Chilly Pad by Frogg Toggs. It is pretty terrific and as a matter of fact I am using one right this minute!

Today we are attending a soccer event. I didn't wear one of my new cooling shirts because this one is at an indoor facility. As an afterthought though, I did grab my new Chilly Pad as we walked out the door this morning. I am so glad that I did!

As the day has worn on and the hot Texas sun has beat down on this place it has warmed up inside. I have my Chilly Pad draped across the back of my chair and it is perfect for keeping me cool while watching the kids work on their skills!

I discovered my exciting new find based on a tip from a new acquaintance I met at a recent MS program hosted by Shared Solutions. She had one and passed it around for all to feel. She uses hers draped across the back of her wheelchair to help her keep cool.

I found mine at Wal-Mart in the hunting section.  I couldn't find it on my own but when I asked the young lady working in the department, she took me right to them. 

They are also available online on a number of sites or

 you can get one by clicking here -->   

I definitely recommend them!

How am I going to pay all these medical bills? Some practical advice.

After the initial shock of a diagnosis with Multiple Sclerosis wears off you realize that this is a very expensive disease.  If you are lucky you have good insurance and a healthy savings to help with the expenses associated with diagnosis and treatment.  If the previous sentence describes you, you can stop reading now.....this post is not for you.

You may also be behind on other bills as a result of trying to maintain your medical coverage.   If you are still reading you have already probably begun to wonder what to do with the mounting medical bills that are flooding your mailbox.   Kindling?  No, just kidding.  The answers are going to vary depending on your situation which can include but likely are not limited to the following:

• No insurance.
• Medical insurance with high deductible.
• Medical insurance but still just finding it hard to cover all of the bills.
• Medical insurance with prescription drug limitations.

Over the course of the next few weeks I am going to share tips for each of the above scenarios. 

If you know of additional ways to help please feel free to add comments or helpful advice as appropriate!

MS Family Discovery Camp at Camp For All is drawing near!

I got a notice on Facebook a couple of weeks ago that MS Family Discovery Camp registration would soon be taking place.  I am super excited to see some of the folks we met last year and make new friends as well!  Last year was our first year to go and it was a pretty fun, educational and enlightening experience for our entire family.  Yes even the teenagers enjoyed themselves! 

You can read more about our experience here!

Hot Days and Cooling.....Vests, Tops, Tanks?! What's A Girl To Do?

The dog days of summer are upon us.  I have always been a summertime girl.  I like the outdoors, water sports and sunshine; and in the past, yes, even the heat.  Now, not so much and August heat in Texas, even in my better days, could prove rough.  

Heat intolerance plagues many of us with Multiple Sclerosis.  I was not really sure that I was susceptible to this particular symptom until pretty recently.  Last year’s excessive heat and drought in our area kept me, and everyone else with a choice, in the nice comfy air conditioning (and possibly in denial) more than I realized. 

This year when I have ventured out I have noticed the symptoms set in that I have never recognized before.  Symptoms that I had however experienced with hot tubs (yes, I have avoided those for years – I like the bubbles but leave OFF the heat please!). 

• I become physically drained or “heavy”.

• I become dizzy

• My vision becomes “narrowed”.

• I feel just overall yucky! 

Thankfully these symptoms abate after I am able to cool off and return to a normal temperature!

So my goal now is to figure out how to deal with the heat without having to become a hermit and hide inside during what formerly was my favorite time of the year.  One thing I have heard of was wearing a cooling vest to keep your core body temperature down while outside.  Last night I Googled “cooling vest” and received a long list of results featuring a myriad of colors in the latest in what I am have begun calling “road crew construction fashion”! 

Now, I am not really a slave to fashion but I am hunting for something a little more feminine that I can walk around downtown on The Square and peruse the windows in the antique stores without feeling like I am going to fall out.  After what seems like hours of searching online I have found the following few options that I am going to give a try.    

This one for sure
and one of these too only in women's, of course.......
and while I'm at it maybe a dress or two......   :)

They have special material that produces a cooling effect when moistened (aka you sweat in them).   They don’t promise the same results as the cooling vests but they do seem like a viable option for most of what I am looking for. 

I will let you know how they work and if you have any suggestions or have already tried some of them please let me know! 

You mean not every health issue I have is related to MS?

When I start to feel "not right", I automatically assume that I am experiencing a relapse or an exacerbation of existing symptoms.  But guess what?  Sometimes I have the flu or a cold or low blood sugar, or high blood pressure.  Or better yet, (and the one I like the least) is I am just aging!?  

The truth is that people with MS have just as much likelihood of catching the same bugs that everyone else does.  They also have the same odds of having coronary artery disease, diabetes, cancer, etc. as the general population.  

So what does that mean?  It means that MS is not responsible for everything that goes wrong with your health!  Here is what you need to do: 

• If you have a new symptom, no matter what it may be, let your doctor know.  
• Maintain a good relationship with not only your neurologist, but also your General Practitioner.  Visit them when you are well so they have a baseline for your overall health.  
• Get yearly health screenings just like you should, including physicals and blood work.  
• If you are a woman don't forget (or avoid) your annual well woman exam.  

Keeping a handle on your overall general health will be beneficial in your maintenance of your Multiple Sclerosis as well.

Itching......the rest of the story!

In the analysis of this blog the number one web search that brings people here aside from being newly diagnosed themselves are keywords labeled Itch and Copaxone (usually linked to each other).

This is no surprise to me because when you have tried everything short of gnawing your (insert whatever body part is itching at the time) off you "Google" right?!  Of course you do! 

If you take Copaxone you are given the long laundry list of side effects that you are given with just about any medication these days.  Yes, I read them.  Yes, they freak me out.  Yes, I still take the medicine.  I realize due to liability reasons the manufacturer has to list every occurrence of everything that may have happened during the drug study whether they can prove that it occurred because of the medicine.  I remember reading these types of drug disclosures before I gave my consent for my first child to have her immunizations.  Don't think that I didn't have second thoughts that day, I did!  But I also know that the benefits outweigh the risks and so yes, she is immunized.  But I digress.

I vaguely remember reading about itching and red lumps as injection site reactions but that seems kind of standard with a shot........right?

I took my Copaxone without a hitch for several months before IT started.  IT came on suddenly and furiously.  It is what I lovingly call the Copaxone Itch!  (When I am not in a loving mood I have another name that rhymes.)  It made me miserable!  I went to bed slathered in Hydrocortisone cream only to awaken in the night with blood under my fingernails from the scratching in my sleep.  I wore long pants in the summer to keep from clawing my legs.  I caught myself rubbing my belly in polite company.   I used hot packs. I used cold packs. I clipped my fingernails.  I took oral antihistamines.  I did everything that was suggested and then some.  And then..........

 

IT STOPPED!  

Yep, pretty much just like that!  

It was just over.  It lasted a few months.  I was not happy during that time.  I finally just told my nearest and dearest what I was going through and scratched.  Those who loved me didn't care anyway and I really was not too worried about the rest, as it turns out!  Occasionally, I will have it happen for a day or so without rhyme or reason but it doesn't stay long.  

So there is hope!  This too shall pass!  In the meantime, try all of the above.  Hopefully something will help you manage until it does stop, but mainly just keep the faith.  It will be over soon and then you can chalk it up to a past experience!

If you have had any luck with getting rid of it more quickly please share because there are many out their looking for answers.

Good luck!

"Am I going to die?" well yes, but probably not today....

Being newly diagnosed with Multiple Sclerosis is scary business.  

I remember the day I got the diagnosis.  It was heart breaking.  I thought my life was over.  Now that I have been on this ride for more than a year I realize that it is not over, I have been given a new life.  In the midst of all of the uncertainty with MS, I realized that I do have control over some things and that is what I can do to keep myself as healthy as possible. 

One of the first things I hear when I talk to people who are newly diagnosed is “I’m not ready to die!”  Well, the good news is, most likely that really does not need to be an immediate concern.  The fact is while we are more likely to suffer from disability in some form or another; our average life span is quite in line with the national average.  MOST people diagnosed do not die from MS but other causes, just like everyone else.  With the treatment options that have become available in the last two decades life expectancy for MS patients has steadily increased over the last 50 years and the progression of disability is able to be slowed in many cases with consistent treatment and modification of lifestyle. 

Well what does that mean - Modification of lifestyle?  It means pretty much what every doctor tells everyone.  It means you should eat more healthily, get as much exercise as you can tolerate and avoid stress.  Oh and you should take your medication regularly, not just when you feel bad or cannot function properly.  MS is described as disease with symptoms that come and go so just because you cannot see or feel an attack does not mean the disease is not progressing.  It is possible to have progression without outwardly visible signs. 

So, if you are “not ready to die!”  Listen to your doctor!   Take control of what you can in this crazy ride.  

• ·         Make healthy menu choices; avoid high fat, high sugar foods.  

• ·         Exercise – Keep your body in the best physical shape possible.  The blood flow is good for the brain and memory retention and the physical benefits are paramount when you have a relapse.

• ·        Avoid stress – I know this one can be the most difficult.  Most people don’t look for stress, it finds them.  You have to learn to walk away, say no, stop and smell the roses and enjoy the moments you have.  All of that sounds so easy (and like a bunch of cliches thrown together) but it is essential for your health.  Take it slow, eliminate one stressful thing from your life, adjust and then do another.  It will pay off in the long run!

• ·         Take your medications regularly – If you have vision problems, do you stop wearing your glasses/contacts because you can see well when you have them on?  No!  They are working so you keep wearing them!   So why would you stop taking your medicine if you feel better and fewer lesions/plaques are forming!?  It is doing its job!  Let it work!

So yes, it is a scary, crazy ride but you have  the ability to take control of some things along the way to make it a better than expected trip!

a, b, c, D……my new favorite letter! Are you struggling with MS Fatigue?

D3 to be exact!

I have for years been suffering from sometimes debilitating fatigue.  Over the course of my life it has been chalked up to a variety of causes:

• Busy lifestyle.
• Anemia.
• Depression.
• Low blood pressure.

It has always been frustrating to me because there never seemed to be a consistent rhyme or reason for my fatigue.

It is true I led/lead a busy lifestyle.  I have several children, have always been employed and/or attending school and am involved in or with various clubs and organizations.

Blood work has rarely, if ever shown me to actually be anemic, when it has actually coincided with my bouts of fatigue it has always been referred to as "borderline".

I have never felt like depression was causing my fatigue because I have not experience the other symptoms often related to depression.

My blood pressure is pretty consistent and has always been on the low side.   It does not fluctuate with my fatigue level.

 Possibly, occasionally, some of these factors contributed to a certain level of fatigue in my case.  However, I feel like the fatigue that would send me to the doctor every few years was what is now known to me as MS Fatigue.

The fatigue that I formerly experienced on occasion now has become a daily burden that I must stay diligent to keep at bay.

Since being diagnosed I have learned several ways to help cope with MS Fatigue.  First and foremost is for me to take care of myself.  I have had to learn to not be afraid to say no to or postpone obligations in order to allow myself to maintain an adequate amount of rest.

Exercise also helps keep up my energy level.  However, I do have to be careful not to get too hot because getting my "core temperature" elevated increases my fatigue.

I also have started taking my Vitamin D3 religiously!  I have noticed a measurable increase in my fatigue level when I forget to maintain a regular daily dose of D3 in my diet.

What coping strategies have worked for your MS fatigue?

Family Fun Despite Multiple Sclerosis - MS Family Discovery Camp 2011

What a weekend!  



Arriving at camp

Most of our family (we were missing the older girls) attended MS Family Discovery Camp over the past weekend.  It was truly a remarkable experience!  We arrived at the "campgrounds” on Friday afternoon. 

The name of the facility is Camp For All.  It is a wonderful place that offers horseback riding, canoeing, paintball, a rock wall, ropes course, zip-line, fishing…well, you get the picture!  The catch is that all of the activities, cabins and grounds are completely  ADA accessible.

My first time on a rockwall (left)!

The Lone Star Chapter of the National Multiple Sclerosis Society holds this camp annually for families with an adult living with MS.  The family can have fun together while sharing and learning from other families about the challenges of living with MS.  Children must be six or older to attend.  Along with all of the fun activities the younger children (under 13) attend a session titled “The MS Experience” where  situations are created that simulate some of the physical challenges that their parent with MS may experience.  One example I heard was of having the kids wear a flipper on one foot and a high heel shoe on the other to create a balance issue.

It was an eye-opening and enlightening experience for me and my husband and kids.  I was a little overwhelmed with the sight of people in various stages of disability and amazed and awed with the positive and persistent attitude of the same.  We enjoyed it immensely and plan to make it an annual event!



The Mysteries of MS and What You Can Do About It

Multiple Sclerosis is a mysterious disease.  There is no known cause, no known cure, and no known concrete trigger for manifestation.  There seems to be a genetic link and there are a variety of suspected environmental, dietary, stress related and/or viral triggering factors.  MS affects every individual differently with variances not only in symptomatology and degree of debilitation but also rate of progression.  With all of the questions associated with the disease it is no wonder that the general population is so uninformed or misinformed about it despite the tremendous efforts by the National MS Society to educate people and raise awareness. 

Treatment options that were nonexistent fifteen to twenty years ago have been developed and have proven statistically to slow the progression and in many cases severe debilitation that has historically been associated with multiple sclerosis and offer hope to those diagnosed.   Statistics though, are about numbers and MS is about human beings.  Human beings have feelings, jobs, friends, families, homes to maintain, LIVES TO LIVE!  Aside from research for drug development, The National MS Society also provides information, support and services to diagnosed individuals and their families and caregivers to aid in all aspects of this disease. 

If you have the opportunity please participate in an MS Movement Opportunity in your area to help raise awareness and funding.  We have joined the 2011 Walk MS: The Woodlands taking place October 22 to help support the National MS Society and everything they do for the multiple sclerosis population.  If you would like to join our team or make a donation, please click the link below: 

Walking the Wilder Way Team Page

Hot Summer Temperatures and Multiple Sclerosis

Wheew!  It sure is hot!  I have read over and over that heat is especially difficult on those of us with MS.  I am not sure really how it affects me yet.  I know I have been especially “overwhelmed” feeling lately.  However, I honestly don’t know anyone that is enjoying the extreme heat we are currently experiencing in East Texas.  If I have had a choice this summer, I have avoided being out in it.   Normally I enjoy the warmer weather and being outside, but this year I have been indoors almost all summer and at this point I have a bad case of cabin fever.  I am ready for some cooler weather and an opportunity to play in the great outdoors a little while! 

The National MS Society has an interesting little webpage about Heat & Temperature Sensitivity that says historically physicians used “The Hot Bath Test” to help diagnose multiple sclerosis.  
People were submerged in a hot bath and if they developed neurological symptoms or if symptoms they had already been having worsened it was determined that they had MS.  Sounds a lot cheaper than an MRI!   

I am curious how the heat affects other people with MS and how they cope.   Please tell!

MS = and the Father’s Day Factor for me….

MS = is a campaign the National MS society currently has to spread the word about MS and how it affects individuals from their point of view.  It is a pretty neat way to educate people about MS.  People have expressed many different viewpoints of what MS equals for them…..some looking at the positive and some looking at the more obvious negative aspects of the disease.  (You can click on the link above in the text to find out more if you are interested.) 

Honestly, depending on the day, my mood and how I feel, MS equals different things to me, some frustrating and some, well, yes positive.  Some of the positive things MS equals are a few of the lessons I have learned from MS.   These lessons include learning to pace myself better and not let myself get overwhelmed with things or by people that are out of my control; Learning to take care of myself, so that I can be better for those that I love; Learning to just not worry so much and truly turn everything over to God; Learning, and this is an important one, to live more in the HERE AND NOW rather than in the past or the future. 

However, there are also times when MS equals something that is not so positive for me as well.  One of those times is Father’s Day.  First, I would like to clarify that I have the most amazing Daddy.   

 He is pretty special to me and I feel so blessed to have been put in his arms at three days old, many years ago.  But there was another man, a father that I never knew and never got to meet because he never even knew I existed, and I waited too long to initiate any type of contact with him (see above lesson!).  I am honestly angry about this situation.  Perhaps this anger is just how I am exhibiting the anger phase of the grief process for being diagnosed because I haven’t had too much anger associated with my diagnosis.  I don’t know, but I do know that I am angry at myself for waiting so long.  I can’t do anything about my procrastination now so I am trying not to hold on to this anger at myself (once again see above lesson) but I am SO ANGRY AT MS because of it.  Maybe it is easier for me to be angry at MS about it than myself or anyone else because I can yell and scream and cry at MS and it has nothing to say back.  I would like to clarify that I am not even mad about my own MS (maybe denial phase?), because you see it was HIS MS that I blame for taking him before I could work up the nerve to contact him.  It was my MS that eventually did lead me to contact his family, which I am glad that I finally did.  I have learned a little about him and seen pictures and learned some about the course of his disease.  I hope to someday forgive his MS, but not today.  I am holding that grudge for now. 

So MS = Mixed emotions for me on Father’s Day.

For those of you that know me, you know that I am not a “down” person.  I realize this post is really a downer and I didn’t mean for it to be, but it has been weighing on me for several weeks now and I felt the need to get it off my chest.   Whew, feel better now!  Thanks for listening!  

Thank you!

I wanted to say thank you to everyone who has contacted me in regard to this blog!  The supportive comments, messages and private emails have all been wonderful and so overwhelming!  Thank you all for standing by me (or helping me stand - in more ways than one) during this journey.

The Copaxone Itch

So I have been on Copaxone for eight weeks tomorrow.  I know because I just checked.  It seems like longer than that.  I have gotten over the fear of needles.  The idea of giving myself a shot every day does not really worry me too much now.  The actual shot is not so bad anyway.   Everyone told me that it would be okay and it really is.   However, the site reactions are about to drive me crazy!  

I did okay the first five weeks I guess.  I had a little swelling and bruising but the swelling went away quickly (usually within an hour) and the bruising was really my fault just learning how to use the little injector thingy.   Now, however I have developed itching at the injection sites and lumps that sometime take weeks to go away.  The itching begins on the second day at each injection site.  When they start to itch they become red and warm.  After about three days they stop itching.  That is great but at any given point I have three that are driving me crazy.  Once the itch subsides a hard knot remains under my skin for sometimes weeks.   

These are all classified as a normal reaction, but that doesn’t make me feel any better when I wake up at night clawing at myself.  I do pretty well at not scratching during the day when I am consciously aware but apparently in my sleep I am not too worried about anything but stopping the itch.  I have scoured the internet and pretty much what I have found is that I will eventually get used to it or it will subside some with time.  Hopefully quickly!  I have tried all the tricks that Shared Solutions suggests to no avail.  I did just read online a few minutes ago about manually taking the cap off the syringe before inserting it into the autoject thingy to prevent any tiny drops from being on the tip of the syringe.  Since the medication is an irritant the theory is that the tiny drop gets on the skin at the time of the injection and causes the itch.  The only part about that that I don’t understand is that the itch usually begins on the second day at each injection site!  I am going to try anyway.  The lumps are not painful, but not very attractive.  

Having said that, I have not missed a dose in all of those eight weeks nor do I intend to miss one!  I am so thankful that there are medications out there that offer a possibility of reducing relapses!  I can deal with the itching and the unsightly lumps if it means that I might not develop any new MS lesions.  I am looking forward to my next MRI to see the results and see how this Copaxone is working for me!  Oh and if you pass me on the street and I’m scratching, well sorry!  Sometimes I just can’t help myself!

UPDATE JULY 4, 2011:  I DO think taking the cap off and making sure there is no medication on the tip of the needle prior to placing it into the Autoject has CUT DOWN on the itching for me. I have also had better luck with the lumps recently by icing them PRIOR TO injection AND THEN AGAIN AFTER. I still have itching but it does not seem to be as extreme as before and the lumps seem to be better (they don't get as big or last as long) with the ice before and after. I was almost to the point of doing manual injections but if this continues to work I think I am not going to go to that just yet.   ****** If this confuses you and you would like to know more please do not hesitate to contact me.  I will find the link to the page that I got the instructions from about taking the cap off of the syringe prior to placing it into the Autoject and put it on here for clarification!******