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?