Time to Change Docs?

I have heard many friends out there question their healthcare team.  Have they lost faith in their team or have they just lost faith in themselves

SHOULD I QUESTION IF MY DOC NEEDS TO CHANGE?

that is a very good question and one that only YOU can decide.  After much research on this topic here are some tips I found.  (I have to credit about.com for a lot of the information)



1.  are you seeing a specialist for MS? General Nuero's are great, but MS is a complex disease and there are so many variables. general nueros focus on over 600 diseases and they may not know the ins and outs to EVERY disease...where as a MS specialist  focuses on MS and learns everything about that particular diseas and it often is the only disease they treat I cannot tell you how many times I have had friends tell me their doctor didnt know what the MS Hug is and doesnt care to learn about it

RED FLAG!!!!!!


2. GOD COMPLEX? does your  doctor  believe in what you say is going on with you?  This is a partnership for a VERY long time...if your doctor does not believe you, it may be time to find one that does

• the MS Hug is very real and I will let Sharon Blog on that as I have not experienced this (and hope i never do) so do not feel its my place to comment on it

3.  Are you staying with your doc simply because he/she is Nice or has a great bedside manner?

4.  Does your doc quickly shuffle you out of the office?  make sure  ALL of your questions are answered.  DO NOT LEAVE OFFICE until they are...dont let doc rush you.  This is YOUR appointment and you are paying the doc for this vist...get what you deserve

5.  do you get a thorough exam EVERYTIME you visit?  If not, it may be time to change.  YOU NEED a thorough visit everytime.  For example..I may be feeling great and dont notice things or brush them off..but with the exam... i find out i am developing tremors...I never noticed them before or brushed them off as twitches.

6.  does your doctor dictate the meds you need to take or do you discuss each possibility and the ultimate decision is yours?  YOU are in control of your health.

7.  Does your doctor scowl when you bring up research YOU have found and inquire on it?  Is the research QUICKLY dismissed? does your doc, if unfamiliar with the research take time to research for themselves so they are educated on the next visit?

8. does your doc partner with your healthcare team?  if they will not work with your other docs, does this doc have YOUR best interests at heart?

9.  Does your doc participate in research or clinical trials?  doctors who participate are often doctors who themselves are looking for and wanting a cure.  some doctors sit back and wait and that may not be bad...that is what you may want,,,but this is something to think about.  Do you want an aggressive doctor or do you want someone that sits back and waits.

10.  It is equally important that you tell your doctor everything that is going on.  They are not House and miraculously going to figure out what is going on in an hour. 

These are just a few things to ask yourself about your healthcare.

YOU DESERVE ONLY THE VERY BEST, nothing less. 

join us at FACEBOOK, TWITTER, SecureACure4MS Website

Heathers journey Part Deux

April 1. 2010....April Fools!!!  Some joke played on me.  I was mad, angry, scared, confused

 

What was going to happen to me?  . 

I barely told anyone.  i felt ashamed...i was afraid...how would people look at me or treat me,,,i dont want to be treated differently...i dont want anyone to know.  what do i do? 

the few that knew did a whole bunch or research for me.  when i was ready to see it, it was available.  i was in denial.  i figured if i didnt accept it..if i didnt acknowlege it..it wasnt real.  But then i think to myself...i cant see right now due to ON.  kinda hard to hide that.  Especially when i would be out of work for a week doing IV Steroids.

I finally got the courage to look online.  BIG MISTAKE.  Online is great...but i was not told of great organizations like Nancy Davis, or the MSAA or NMSS sites.  thats a lie..i was told by my nurse but i wasnt really listening.  sites i visited said i was going to have a very short life and it would be a tough life. i wish i had listened to my nurse during MS education...all i heard is there is no cure and i would have to give mysel shots for the rest of my life, or until a cure of new therapies were formed.

not these shots                                         

     














these

I really got engaged with the Facebook world and found the NMSS site.  From there i was invited into a smaller group where a handful of us networked with each other.  This group was my support system my outlet.  In this group i found my now Best Friend. 

later that year i had some lesions appear on my spine reqired me to use a cane to walk.  my balance was shot.  i could barely lift my legs to put socks on.

i had issues driving as well.  THIS WAS WRONG OF ME AND I THANK GOD NO ONE WAS HURT for my stupidity.  but I still drove and to break i would have to lift my leg to the break pedal

and use both feet to apply the break to stop

my MRI indicated my lesions had doubled in the past 4 monts and i had some permanent damage on my brain,  was this new cane a permanant extention....i had a very hard time with this..i went from being athletic...never sick in 36 yrs to now walking with a cane...steroids were called again

I cant stress enough how important it is to have a support system on your side.  I had family...but the person who was really there for me was my best friend Sharon.  Like she always says....MS doesnt define who you are.  you have MS but it doesnt have you.  Dont give in or give up...ADAPT

I have carried and apply that every day of my life.  those words have helped me break out of my "feel sorry for me" shell...stand up and ADAPT!!!  I am in charge of my life.  MS is something i have and not who i am.

after steroids and physical therapy i was able to retire my cane...i do pull it out here and there and when i do, i am not embarrassed by it anymore. 

Why should i feel embarassed...I DID NOT CAUSE THIS!!!! 

Sharon helped me see that. 

THANK YOU MY DEAR BEST FRIEND

I quit feeling sorry for myself and quit worrying about what other people would think.  I began talking about my disease and helping others that were newly diagnosed.  I dont want people to feel scared like i was.

And now...i want to do more.  I DONT WANT ANYONE ELSE to have to go through this and those that are already diagnosed, i want a CURE for them,  I want a cure for ALL OF YOU.

I have to admit.  A Blessing did come from all of this. Something that would never of happened, had it not been for MS.  Sharon an I live 1100 miles apart.  We would have never met had it not been for our mutual diagnosis.  I am thankful for every day.  I hope and wish for you all to have a Best Friend as wonderful as her.

In fact this past April we celebrated our Friendship by getting a MS Awareness Tattoo.  tattoo's aren't for everyone..but it is what WE wanted to do.

                    my tat

  

   

  

            sharon's tat

Heather's MS Diagnosis

I was a pretty healthy, never sick kid growing up.  I prided myself on never being sick.  I told everyone its because i eat lots of garlic.  I played softball in High School.  One game now stands out...it was a game during my senior year in 1992 i was running from 2nd to 3rd... i didn't have to slide... i was 10 feet from base and i fell...i had to crawl to the bag.  I am such a klutz (not normally but that is what i told myself)

in 2004/2005 - I woke up and the side of my face was numb.  no i didn't go to doctor.  i told myself i would go if it got worse...in the next few days it started getting better.  whew

later in 2005 i woke up to use restroom...i kept falling and and I had not control over my bladder.  I MUST JUST HAVE THE FLU is what i told my self

in 2008 my left arm went numb...What...am i having a heart attack...isn't that a sign?   you would think i would go to doctor....NOPE....let me see if it gets worse...it lasted a few days and went away....Oh must of been a pinched nerve....

Let me preface this by stating my family is full of doctors... but I HATE GOING TO DOCTORS!!!!  I only go when i absolutely HAVE to. I know I know - DUMB

Its 2009... I am fast tracking at work..I love what I do.. I love the Challenge I face everyday.  I love the interaction with my sales force, motivating them, guiding them, coaching them.  AWARDING them with Cars, trips, etc for THEIR hard work. I was good at what I did.  I had passion and drive for everything I did.  In 2009 that drive and passion started to go away.... I must be getting bored....I need a new challenge is what i told myself.  I love what I do, but it time to move on to other areas of the business.....or so i thought.

end of 2009 I was presented with an opportunity that should have been PERFECT for me.  Should have been a piece of cake and the necessary stepping stone I needed to advance to the job i really had my eye on.  EVERYONE including my self knew this was a gimme position,

What happened... i could not focus..,my attitude started to change... not only towards my job, but even in my personal life.  I didn't CARE... my attitude was OH WELL.  I was screwing up, not meeting deadlines.  In one breath i was MAD at myself and confused and in another i really didn't care.

Its now March 2010..I am at work and I feel something go into my eye, so i thought....it didn't really hurt...just annoying and I cant see.  so i pull at eyelashes hoping to release what is in there..nothing works.... I am sure it will come out this weekend.  Monday morning hits....I still cannot see and it's now irritated...whatever is in my eye must be embedded in my eye.  I need to get to eye doc.  I call and they cannot see me that day but are concerned that I cannot see and send me to a retina specialist.

doc sees me and says retina looks good...its a scratch on eye and I have dry eye.  he gave me drops to take and said i should be find in a few days.

Guess what i still cannot see.  My eye doc gets me in to see her. she runs every test she can.  "OK doc, how do we fix this", i say - she said,"I am sorry,  it cant be fixed, it looks to be vascular.  I need you to see your primary doc right away to run more tests to ensure it doesn't happen to other eye" WHAT!?!?!?!

I don't cry often, but i started balling.  What do you mean we cant fix it.  We didn't try anything....

My mind is racing.... I have not told anyone..I have not told my mom that i was even having an issue...WHAT AM I GONNA TELL HER?  HOW am i going to tell her?  She is flying down next week to visit...do i tell her now before she comes or tell her while she is here???!!???!!!

You know you have great friends when you are in a time of crisis.  My friend Rebecca offered to help me call my mom the next day to let hew know.  She doesn't realize how much that meant to me.

The next day comes...i am supposed to call mom and eye doc calls.  "there is a 5% chance this is an issue with your Optic Nerve and I want you to see a nuero opthamologist.  I have already called, explained your case and they are going to call you to come in"

YEAH!!!!  I really hope its my Optic Nerve...oh wait maybe i will have to have eye surgery to fix it? no mention of MS at this point

N.O. office calls me and has me come in stat.  just from phone call with my opthamologist she has a suspicion of what it was and if it was MS she didn't want me to wait any longer.

She examined my eye...look at optic never and said... I am 85% sure you have Optic Neuritis... I get a big smile...yes...its my optic nerve...i will see again are my thoughts.

she then proceeds to tell me about this disease call MS....as soon as those letters came out of her mouth i tuned her out and started thinking about muscular dystrophy.... i was sadly one of the uneducated about this disease.

she wanted me to have an emergency MRI to confirm.  She mentioned that people with ON elect to have IV steroids.  Elect?  its an option...you are asking me if i want to be stuck with needles or not?  i know my answer..NO WAY

My aunt came over and got me to drive me to MRI...The radiologist did a wet reading and within 2 hours...i was told i have have ON and have the lesions indicative of MS.  She wanted to get me started right away on Solumedral.  A UTI delayed my start.  They didn't want any infection in my system.  during delay i saw my PCP to get UTI cleared up and go in right away with the MS specialist she recommended to me.

He read my MRI and said it look to be MS.  However I am going to have you do all this blood work as there are other diseases like Lyme, Lupus, RA, EBV, and others that we need to rule out.  Blood work came back negative..UTI was cleared up and he proceeded with starting me on Steroids

He officially diagnosed me on

Please share your DX journey with us.  I will blog later on what has happened since the Diagnosis date.

Heat and the Holiday

Happy Birthday USA

Many of us have today off from our 9-5 and will be having BBQ's, going to the parks, having fun outdoors.

STAY COOL

We in the US have been experiencing some brutally hot weather.  Here are a few tips to keeping cool so that you can help maximize your day.... and enjoy some fireworks tonight

COOLING TIPS

• Drink Cool/Cold Beverages ALL Day... this not only keeps you hydrated, but helps keep your core temp cooler
• Eat cool foods - WHAT??? - cool foods like Salad, fruits and veggies...things that you eat cool or cold... ICE CREAM, Popsicles

• Swim - ideal is 85 degree water or cooler
• If you have cooling products use them...if you don't... consider freezing a bandanna or washcloth.  keep it in a cooler.  if you get hot, put it on the back of your neck
• if you are able to escape indoors for a bit, do it.  the A/C is your best friend.
• did i mention ICE Water? ICE ICE BABY.
• Stay away from tight, dark clothing... break our the white or pastels.  today is not the day for form fitting clothing...your body needs to breathe otherwise you are trapping heat in and that could cause your day to be short with your family and friends.
• Cold Showers are not just for sobering up anymore.  If you have been in the heat or you are about to do something physical...take a cold/cool shower first to help decrease your core temperature.

Stay cool my friends and enjoy your day.

Do you have any tips?  if so please comment those below

MS is not a tourist attraction

4 star resorts
beautiful blue water
sandy beaches




.....wait who is this being marketed to?  The patient or the family.


Medical tourism is on the rise...PLEASE educate yourself...your health is not a vacation or tourist destination....many of these clinics take no responsibility for the outcome of procedures... a lot of overseas clinics do not have the high standard of care YOU deserve. They are playing off your desperation to get better....our best medicine right now is s healthy diet...exercise...vitamins and an approved DMD prescribed by your doctor. We would all love a quick fix....it doesn't exist yet....we are all praying and hoping for better meds or a cure to come soon. Be strong...adapt...and be there to support one another...we are a family and family sticks together


DONT COMPROMISE YOUR HEALTH AND YOUR WALLET!!!


and now i see some places are using celebrities names to try to entice you to visit, even though the celebrity has not endorsed this.