Waiting....

So I'm working on being rested and restored after all the holiday hoopla! Fours straight days of go go go has put me on the DL list for a couple of days :(   Hope everyone took precautions on staying healthy this season. 

    Now it's time to  focus on the new year.   Hopefully, that means that the new oral drug for Multiple Sclerosis BG-12 will be on the market soon.   BG-12 is a new oral drug by Biogen Idec.  The reviews are promising in the fact that side effects are minimal.   Good news for all of those who are still taking injections. (Me!)  And this particular oral med seems better in that department than the two latest on the market.  (hair loss?, heart monitored? No thanks.)

My Christmas Diagnosis

I hate to admit I am one of those people that likes to rush through the Christmas holidays and just get to the other side of normal. It might have something to do with me being diagnosed with MS at this time of year or I'm just one of those types who gets lost in all the craziness. 

Four years ago this week I was diagnosed with Relapsing-remitting MS.  We had just transferred 6 months prior to Murfreesboro TN for my husband's job.  We sold our small business of 16 years and I stepped out of the real estate business (just in time for the economy to tank so no hardship there)  That was hard enough except the city we were supposed to be moving to was Tampa Bay Florida area.  My husbands company made the change 2 weeks prior to moving.  I had researched the Florida location and we were flown down to look at housing, neighborhoods, schools, etc.  Everything was in place.  Then the change of locale happened.  I was a train wreck.  I know nothing about that area or schools.  We drove up on one weekend and his company helped us find a house and the next weekend we were there for good.  It was one of the hardest things we did.  I hate going into something blind. 

After several months I found a job, our neighborhood was phenomenal, we started making friends, the boys school  was wonderful.   Then I started getting a numb tingling feeling in my arm.  This quickly morphed into complete numbness from my forehead and left side to my left fingers.  I couldn't write. I slurred when I talked.  I went to the Dr because my husband was worried I was having a stroke.   The Dr. ruled out a stroke but sent me for an MRI.    Within several weeks I had so many tests run and finally the all scary lumbar puncture.  After all that my diagnosis was a firm MS. By then, I was so sick.  My vision was completely off whack, I dropped 25 lbs in a matter of weeks, My gait was unsteady and I was in a constant panic attack. I wasn't even sure what Multiple Sclerosis was much less what would happen to me  by having it. It was a horrible time for me.   I was hospitalized several times and given IV steroids to help speed up the exacerbation's recovery.  

I will never forget that Christmas season.  

Finally by that next spring I started feeling better.   But, by then I knew what MS could do to me. And did.   It took me several years to come to terms what I now was able to do vs what I used to do.  And also, how to take care of myself and try to help flare-ups be not so severe or scary. 

In my eyes, I'm a better person now since my diagnosis.  I am more calm,  I am kinder and patient with others. I take medication properly and take care of myself. I look at my boys with constant wonder.  My disease has given me a better outlook on life.  

I now help people now who are newly diagnosed with Multiple Sclerosis.  If I can give anyone hope or guidance and make that first year not so scary then I am happy :) 

Blogger Day of Silence

Holiday Fatigue

Holidays are definitely here!   I had every intention of going shopping all day yesterday.  Have been feeling great and was ready to roll.  Somewhere between coffee and shower  that sleepy fatigue slipped in.  You know the one.  That walking and thinking in mud kind.   Seriously??  I had plans!!!  

Well, best laid plans and all that.   Sometimes MS symptoms bring everything to a grinding halt.   Sometimes the fatigue sticks around for days. Other times it's fleeting.  Lucky for me it cleared up just in time to head to a Christmas function.  But, there have been many times where it doesn't give you that respite.  

Today, I stayed in my jammies and did a ton of Christmas shopping online.  (Thank you Amazon!)  I showed that MS b%$## that I'm still in charge. So there!! And if she even dreams of making me miss my baby #2 baritone boy sing in his choir concert tonight  I will again prevail and show her she will never win with me.  :) 

Seriously though,  it's best to ALWAYS be prepared for whatever symptom flies your way.  Take it in stride. Modify what you need and keep going.   Live your life to the fullest.   You won't regret it.

What's Another Birthday

Well, another birthday is here.  Birthdays as far as birthdays go don't bother me. I just let them float on by and feel unchanged from year to year.  I'm really not into age issues.  And if someone wants to acknowledge it that's fine. For the last few years birthdays are a frame of time for me to judge how my MS is doing since my last birthday. 

I sat down today and reflected on this fall, past summer, spring, winter and how I felt.  And too be honest it's been a pretty good year.  Winter was kind of a bummer along with spring with normal ailments ie. colds, allergies.  But, as far as MS symptoms go it wasn't horrible.  Or maybe this is my first whole year to deal with the symptoms and keep going or know when it's time to rest and not push it.    Hmmmmm.  I had bouts with fatigue worse than ever and numbness along with muscle spasms.  But, with medication, support and exercise it didn't make me panic as much and worry about future flare-ups.  Interesting. 

So, I'm good. I'm still walking, talking and being me.  Bring on the birthday cake.   I'm ready to celebrate!

The White Elephant In The Room

I hope everyone had a wonderful Thanksgiving holiday!  Or even just a four day weekend!   Holidays can be stressful enough even when you don't realize it.   For some  getting together with family and friends can be challenging on a normal basis.  For people with MS (and of course other ailments or diseases) sometimes it turns into the white elephant in the room.  Some families and friends have a hard time knowing what to say (if anything) to someone that has MS.  Should they ask how are you?  Is that a dumb question?  Or maybe you are newly diagnosed and the topic of everything lately has been "Sara's MS" and people are getting tired of hearing it.  (sad, but true)

Everyone handles this different.  Some people with MS feel better if they talk about it to others.  Everyone is a sounding board to them.  And it makes the person with MS feel better knowing everyone understands how they are.   Especially the newly diagnosed and when symptoms aren't as visible to others.

When I was newly diagnosed I had family  & friends who called daily to see how I was.  I had friends who hung in there with me (your true friends will show up during this!!)  and some that were just uncomfortable. (Those I cut loose)  Seriously,  it is nature to take flight from what scares you.   Some people are uncomfortable with your diagnosis and when it gets down to it they are scared of their own health and mortality.  It gets too close to their comfort circle.  But to be honest I got tired of the subject.   Once I realized that I was still me and able to do everything that I love even if I had to modify,  I didn't want to talk about it anymore.  Boring. Let's talk about you!

Now, I have had several years do get comfy with my friend MS.   If I feel good or even semi-good I say that when people ask how I am. If I'm feeling bad I just shrug or briefly say what's bothering me.   If my MS is brought up I answer the question directly and switch the subject back to something else.  MS is not going to be what everyone sees when they see my face.   I won't let it.  I have plenty of other topics to share without letting that ^%%&% biatch MS  ( sorry! that's what I call my MS) horn in on everything I am about. And frankly, I don't won't to be "that" one that talks on and on about her MS.   To me that's just letting MS get an upper hand and winning.   Not me.  Not now.  :)

Feeling Good

Shingles are feeling much better.  ( or as my girlfriends are calling me "herpes gal"  (that just sounds ewwwww and is so not connected to the "bad" herpes!!)I was fortunate to only have a light case.  Or the long term pain meds are working better than I thought!!    Ironically, this is the 2nd case I've had since being off Copaxone (MS disease modifying med)  Hmmmmmm......Coincidence? I think not.   Still hanging on for BG-12.  But, if it gets pushed back much longer I will have to consider alternative oral meds.

Taking care of yourself physically when you have MS is just as important as the emotional care you need.  Eating right, getting enough sleep and rest as well as  exercising to your capabilities will keep your body fit and hopefully stave off any bugs or viruses that might come your way.  I work with kids so even though I try to be extra careful that one little bug will sneak up on you.  

So, especially with flu season on it's way, take care of yourself!  MS is bad enough without adding boring stuff like colds, viruses, and (cough) shingles.

Also,  try concentrating on the days you feel good.  Some months it's nice to add up more feel good days than crummy MS days.    I have to stop and do that sometimes when my friend MS tries to take over my whole days and weeks.  Not going to happen.

Have a phenomenal week!!

Shingles Anyone?

So I had my first appointment this week with a new Doctor.  (from my health care team? post earlier this week)  Can I just say "love him"!!  I've been needing an actual Dr. since I've been using a Nurse Practitioner for the last year. (not a fan of the Dr. over her)

I went in thinking it was going to be a waste of time and we wouldn't "click".   But, to my surprise I was extremely impressed with his MS knowledge.  Come to find out his wife has MS!  And she goes to the same neurologist I do at Vanderbilt in Nashville!  Whooo Hoooo!   I think we have a winner!!  

After a thorough exam I found out I was running a fever and not well.  I thought I was just feeling crummy  because that's what we do when we get older.  Feel crummy.   He asked about any rashes  and actually I had a weird one on my bottom of all places.  (nothing like showing your bottom at 8:30 in the morning to a stranger!)   Instantly he told me it was shingles.  I might have known that if I could see that side of me.  And I had a bad pain that went around my waist.  Super.  So I come home with 4 prescriptions. I really need to get in good with my pharmacist.  Maybe make him some banana bread or something to defray my prescription costs!  lol 

I am so glad that I read that article about having your MS health care team.  It got me motivated to add and revamp my team.  So take it from me.  It can make a difference surrounding yourself with quality health care professionals that work for YOU.  (and that you like!)

Practice What I Preach

Well, I did what I set out to do from Friday's post.  I gathered info on numerous Dr's. and caregivers.   Very tedious I must say.   But, I got on a roll and knocked it out.  I now have names and numbers for the types of caregivers I might need in the upcoming year as well as a Dr. appt. Thurs.    Once I put that particular post out there I realized I needed to practice what I preach.   I feel much better now that I did and I learned some things along the way.  If I can do this trust me anyone can. 

Now back to more fun topics.  I hope everyone is feeling well and enjoying these fall days.  I'm still trying to get used to it getting dark so early.  I caught myself going to bed at 7:30 a few nights ago!   I'm also having to really get myself geared up and not get lazy about exercising.  I have certain night classes that I enjoy but with it getting dark early I have been skipping :(   So, it's either go early or buck up for me.   We know we feel much better when we do it. 

I have met 2 people just this past week that have MS or a relative does.  Is it me or does our MS circle seem to be getting larger?  It is good in a way for us MS'ers to have friends and contacts within our circles but it is concerning that more people are being diagnosed with MS.  :( 

For those of you waiting on BG-12 hang in there.  I'm right with you.  :)

Health Care Team?

I was reading the Momentum monthly magazine today and an article made me really think.  For anyone connected with MS, Momentum is the The magazine of the National Multiple Sclerosis Society.   It has great articles on pretty much anything MS related.   Anyway,  this article was about your health care team.  Team?  I have a neurologist that is a 2 hour drive away and a local primary care physician (and actually I just see the Nurse Practitioner) who is only open 4 days a week.  Listed is the recommended team you should have when dealing with MS.

1.Neurologist (obviously!)
2.Primary care physician (who takes care of minor issues whether MS related or not.
3.Physical therapist (for strength, fatigue,mobility,balance)
4. Occupational therapist (improve motion, suggests tools to help in everyday living)
5.Psychologist or psychiatrist (counseling for emotional changes that come with dealing with a chronic disease)
6.Social worker (helps with community resources)
7.Speech pathologist (for communication problems)
8.Vocational counselor (employment questions)
9.Urologist (treats bladder issues and urinary problems)
10.Ophthalmologist ( for vision impairment)
11.National MS Society MS Navigator (refers health care providers)

Wow.  I have actually had a need for most of these at least once in the last few years.  So, before I need any of these types of doctors or care givers I am going to be pro-active and first start with my insurance company and see what Dr's. are available in my area.  Then I would like to narrow it down by calling them and seeing if there are any who are familiar with MS.   Then if possible make a consultation appointment to discuss what my needs may be.  Now, I certainly won't be able to do this with all these types of care givers but maybe a couple that I see I might be needing in the future.  But, having the names and descriptions of these professionals handy would probably be smart. 

So, my suggestion is to assess your health care team.  If your not happy with any of them CHANGE.   I have had that issue and was much happier when I changed them.  It's hard enough dealing with symptoms but paying and being frustrated for a Dr. who doesn't meet your needs in any way is not acceptable.

I have actually just added one more thing to my weekend by assessing my health care team but, I would much rather be prepared for the future and I hope you will to!   Have a fabulous weekend!

Yummy Yoga

 

Plop, plop, splat......No, it's not raining. It was my sweat hitting my yoga mat. ewwwww. I'm back in a hot fusion yoga class after 6 months. Why, oh why did I quit??    Well, to be honest because of the lack of friendship between MS and heat.  I've been taking some regular Yin classes but dropped out of the hot class this summer.   I think it was just too hot this summer to deal with it.   But with this cooler weather my muscles tighten up and I have found yoga to be my friend.  Anyhoo, I'm back and talk about relaxed... The room is heated to 90+ degrees and you feel like butter. Your poses are deeper, your yin and yang entwine, your mind is centered. (read: blank) Lovely. I hope this feeling lasts til tomorrow. If you have never tried any type of yoga I recommend it highly for MS patients.    The stretching helps your muscles immensely and for those of us with muscle spacticity that is heavenly.   The mental side helps you focus and detach from physical discomfort.  Perfect huh??!!  For all Ms'ers who have heat issues there is a wide variety of yoga classes that don't involve heat.   And any good instructor will always point out that every ones body's are different and only go as far as your body allows.  So put on your strechy pants and get moving!

 

Namaste

MS Community Involvement

Getting involved with your local MS community can be a excellent way to meet people who are close to MS.  Whether a fellow patient, a caregiver or a relative.  Also, your local chapter of the National MS Society has events going on through out the year.  They might not be in your home town but, signing up for the local chapter news letter can give you contact information that might be close to where you live. 

  There is a local lunch group that meets in my area once a month and it is nice to be around fellow MS'ers who you can understand and sympathize with your symptoms.   I didn't realize how hard I was trying not to complain or voice my symptoms as to not sound like a whiner until I went to a group. Wow! how refreshing to let it all out!!  

There are also some great sites that can get you linked with patients in your area or have similar concerns.   Patients Like Me is a great website and has an excellent MS community.  Also, the National MS Society has boards and groups as well as volunteer opportunities.   I am an online peer for the NMSS and have helped newly diagnosed MS patients with their thoughts and concerns. The Multiple Sclerosis Association of America is extremely helpful for finding local chapters and sending cooling vests and other products.   Just because you have MS doesn't mean you can't extend a hand to others.   And in my case it makes me feel better as a person to have what I call "MS outlets".  It helps keep MS from being on the forefront of my life. 

Now I will get off my MS soap box and wish everyone a happy weekend!!!

Guest Blogger~~Emily Walsh, Methoselioma Cancer Alliance

 I have the privilege of having fellow blogger Emily Walsh give us some insight to health risks among former soldiers.   Emily is a community outreach blogger for the the Methoselioma Cancer Alliance.   Thanks Emily for being my host blogger!







In Advance of Veteran's Day, Understanding Former Soldier Health Risks

Soldiers make a tremendous sacrifice when they choose to serve. Their sacrifice does not end when they get sent home from war or when they leave the service. They continue to deal with many of the health risks associated with service. A smart veteran can do his or her part to counter these risks. By smartly going to the doctor often and maintaining a healthy lifestyle, veterans have an opportunity to live healthy lives for many years after service. The first step to living a healthy life is to understand and recognize the dangers that veterans face.

Mesothelioma and Other Cancerous Diseases
Mesothelioma is a disease that occurs when a person is exposed to asbestos. Though cases are much more rare today, this used to be a major problem for veterans and civilians alike. Today, veterans of the Iraq and Afghanistan wars are more apt to contract this disease. This is because of the nature of modern warfare. In modern war, older buildings are often destroyed. When those buildings are knocked down, all sorts of harmful things are expelled into the air. People who have served in these wars need to be careful if they want to preserve their health.

What can you do to reduce the risks associated with these diseases? First, you can be sure to visit the doctor at the first sign of trouble. The earlier you discover those things, the better chance you have of undergoing life-saving treatment. People who wait too long will have limited options for treatment. It might seem like a good idea to put things off. As a veteran, though, you should be proactive about these things. You have the opportunity to get some of the best care in the world if you are willing to take advantage of it.

Maintaining an Active Lifestyle
For too many soldiers, post-active life brings about health trouble. This trouble is often related to a change in lifestyle. Soldiers in active duty are required to uphold certain fitness standards. Though every branch is different, they all have minimum standards and physical fitness routines. This training helps to keep your body and heart in good shape. When you get out of the military, you would be wise to maintain some form of training. Good fitness can help to keep your heart in great shape going forward. You will stay away from stress-induced heart attacks and the terrible results of heart disease.

Don't Forget About Your Mental Health
As a veteran, you are probably aware of the effects of war on mental health. Most veterans feel that mental issues just won't happen to them. You should be aware of these risks and you should be willing to seek medical help if necessary. A study from the VA shows the clear link between military service and stress-related mental health issues. The support services are there for people who are willing to take them. Don't delay when your mental or physical health is on the line.

 

Excercise

When I was first diagnosed with MS the word exercise was in a gray area.  My primary Dr said to stay rested and don't over exert myself.   My fabulous neuro said to get out there and do whatever I can in the exercise dept.   His theory is that build your stamina and get your muscles as strong as possible so when an MS exacerbation lays you flat it might not be as hard as normal to recover.   I have followed his advice and found it to be dead on.  

While there are varied limitations to MS patients physical capabilities there are just as many accommodating exercise workouts to be had.   For me, Yoga is number 1.   It works on your mind equally with your body. Stretching my muscles seem to cut down on the muscle spasms in my legs and arms I have from time to time.   My second favorite is Zumba.  It is a wonderful fun cardio workout for all ages and types.   And it's the only place I can be my klutzy self and blend in!!!   Swimming and walking are also top picks.  My local YMCA has a class that all the exercises are performed sitting in a chair.  That's a great way for our wheelchair friends.    

Exercising gets your endorphins flowing(cliche I know)  and makes you feel emotionally empowered.  It gives you the mental strength  to handle physical handicaps with a better attitude.  

Always talk with your Dr. before you start an exercise regimen.  But, in my opinion it gives me a better perspective on my "quality of life"   and I have met some great friends along the way who also have limitations!

I can't think of a reason not to exercise.   It's good for the body and soul. You can't go wrong with that!!


****Reminder:   I am not a Dr. or counselor.   These posts are strictly my thoughts and ideas about being an Multiple Sclerosis patient.    :)

Fall Relief

I used to regard fall as an unwanted prelude to my least favorite season winter. But, in the last few years thanks to my relentless and annoying friend MS I have found relief in the coolness of the season.  I was a summer gal through and through.  Bring on the heat.  Now my body says no!  bring on the cool balm of fall.   Hmmmmmm,  never thought I would feel that way.   For those of you who suffer with MS "fatigue" (such a lame word for what it really feels like huh?) knows with the heat and humidity of summer that fatigue can put you down.  I mean down.  Walking through quicksand down.  Gotta lay down anywhere down. Can't think straight down.   Worrying that MS has finally gotten the upper hand down.  But, I've noticed with the falling temps I feel renewed.  My thoughts seem clearer. I'm able to be outside without suffering.  Nice. 

 Now I appreciate fall.  For making me feel like I'm not always feeling bad. For letting me know it gets better.  For giving me a break of the plateful of symptoms down to just a few.   Hey, what's a little numbness and tingling?? 

So with that I say welcome fall :)

Heat & Humidity

Well, I'm back from a wonderful vacation with my family!   Happy to say that I only ignored my own vacationing with MS advice only a couple of times!  Destination Florida!   As you all might know Florida is hot and if you are prone to heat related symptoms you should heed your body's signals!!  I am one of smaller percentage who actually loves heat.  Except, when it comes with high humidity.  Which it did the first few days down there.   I found myself drained, leg dragging and numbness settling in by noon.   Luckily, my husband knew the symptoms before I did.  Every day I found myself shuffled back to the resort room like a toddler needing a nap.  By evening I felt well enough to tackle the sights.  And my husband and teenage boys seemed to have no problem dumping Mom in the room and taking off!!  

It still comes as a shock to me when I'm not able to keep up with my " before MS" pace.   I even think surely I can do it if I just push through the symptoms.  For everyone who has tried that (myself included)  you usually end up worse shape and it can push your recovery back.   I used to go all day on vacations all the while soothing, prodding, and taking care of 3 boys (4 counting my husband!).  

 Oh well.  I'm still able to travel and do things I  love.   You just have to modify.   And even though for some of us that term never pertained to us physically you can.  Get over your pride.  If not you will find yourself being stubborn and not traveling or taking vacations.  Much less enjoying them.  And that is just letting MS win. 

So, get on that plane, train or automobile!  Get out there.  Take a nap, wear your cooling vest, use your cane or wheelchair.   I guarantee you won't regret it!!  

Traveling with MS

Well, as I pack my bags getting ready for our annual Fall vacation I thought how my traveling has altered with MS.   I have always been the primary driver on vacations and my husband has slowly been making me take breaks and taking turns when driving.  "I'm fine I say!"   "Of course you are" he says.   But he says let me drive now and you won't be exhausted for 2 days upon arrival.  Hmmmm.  He does have a point.  Sometimes other people can see changes in you before you can.   Sometimes I wonder how on earth have I changed so much in the last 5 years?   I was Wonder Woman, Invincible.  My husband worked crazy hours and I did everything on the home front without complaining.   What happened to me?  If I had not gotten the MS diagnosis would I still be chugging along oblivious?   Are my symptoms more noticeable since I know what I have?  These  questions plague me on occasion.

Well, enough pity party for me!   Vacation here I come!!!   For whatever type of traveling you like to do always be prepared for that sneaky MS.   Don't forget to take your medications along with prescriptions in your name with you.   It's easy to forget when you are having fun!   Think ahead.   Will you need assistance such as a wheel chair for your adventure?   Extra breaks or rests?  There is nothing wrong with all of this.  In fact,  the more you are prepared the more you can relax and enjoy your time.

To be honest, we are going to one of our fav destinations, Disney World.  My sneaky boys have been hoping I need a wheel chair for 2 years so they can get on rides quicker!!  Unfortunately for them I have not needed it!!  But I do need naps so I make sure I don't burn myself out and be out of commission for a couple of days. 

Listen to your body.  On vacation it is easy to get distracted and push yourself beyond your limits and the last thing any MS'r needs is a big flare up on vacation. Pace yourself and enjoy!!!

Getting your mind off MS and more on You

Well, you would think with all my laying around after falling a week ago I could post something!   Nah,  Seems I spent the week reading, watching tv and  well, nothing.   The nice part about it was having all that pain in my rear (literally) kept my mind off my dear friend MS.   Actually quite nice not noticing the numbness, fatigue and other little MS reminders this week.   My focus was keeping my poor back and bottom in a comfy position which is harder than I realized!   Rolling over every night in bed guaranteed a nice ouchie wake up. 

Looking back over the last week I realize again, for me that having something else to deal with can help your mind stay occupied on other things.   Now, I know that's just for the little MS reminders. (That's what my Neuro told me a couple of weeks he calls them)   When the biggies happen there is no ignoring them.   But, I have decided on days when I don't work and am feeling good to make good use of that time.  I have charted out a list of projects from painting a bathroom to cleaning my teenagers closets (gahhhh).  There are always something to do and I have decided to not make excuses and do them. (fun or not) 

Holidays are around the corner and it's always fun to spruce up your home inside or out with some holiday spirit.  I'm a Halloween nut so I am all about spooky and spiderwebs!
Keep going and try to avoid that "I have MS" rut.   I know it first hand.  Even on decent days sometimes it can bring you down.   My goal is that when people see me I am cheerful, smiling and with my known sarcastic wit.    As you all know when an MS flare up rears it's ugly head it's hard to keep that cheery demeanor.  But, when you can do it!  Always!!!   

Well, reading all this sounds kind of chipper and annoying for me but it's true.   I hope everyone has a fabulous week!  

BG-12, Not so graceful moments

Ok,  for all my MS research, blogs and communities how come I just learned about the new oral drug BG-12????    Have I been under a rock?   My Mom txt'd me this morning and saw it on Headline News.   Seriously?    While this whole week I have been debating between losing my hair with Terflunomide or having my heart slow down and stop with Gilenya there has been BG-12 on the horizon?   After googling everything I  can about it, the low side effects and potential disease slowing results sound fabulous to me.     Wow,  it sounds like the wonder drug of MS.   Think I will gladly wait a couple more months off Copaxone to try it.   :) 

So, I'm not the most graceful gal in the world.  I slipped on my patio steps a couple of nights ago and went boom.  A sprained wrist, bruised back, severely bruised bottom (I swear, I had no idea a bottom could bruise so bad!) and various other aches and pains has left me pretty much couch/bed ridden.  Sitting in a chair is barely tolerable.   Of course, my issue is I don't want to go out in public and have friends think it's an MS thing.   We MS'ers actually do and can have accidents and mishaps that aren't MS related.  But, when you have people looking at you under the MS microscope it's hard to convince them (in my case)  that is wasn't a balance issue.   lol   It's actually easier to blame MS than to admit what a klutz I am.

Decisions, Decisions

Well,  the FDA approved MS modifying drug Teriflunomide (Aubagio) which is one my neurologist wants me to consider next to Gilenya.   Hmmmmm, decisions, decisions.   I am thrilled to get off injections but there is much to research as far as side effects with these two oral disease modyfying MS drugs. 

My top concerns are the heart slowing effects of Teriflunomide.  You have to monitered for 6 hours upon taking the first dose.   And then you have to be monitered monthly with blood work.   Hmmmm

Gilenya has a side effect of hair loss.   As a woman that can be a crucial choice.  It's not like I have thick locks falling to my waist but I'm used to what I have and don't want any less of it....

And after reading up on both meds their side effects are actually quite similar.   I didn't experience these type of side effects with Copaxone Injections.   So it looks like I have another decision to make.  Gahhhh  I hate that!

Luckily it is the weekend and again like Scarlett, "Ill think about it another day"

MRI Results,,..Finally! Teriflunomide or Gilenya?

Continuation from last week........



Drove back to Nashville today for MRI results.  Finally!  That pesky disc was burning a hole in my purse!!!!   Well,  bad news first,  I have more lesions.  I had 7 two years ago and today he told me there were "many more than 7".  Good news is that none were active.   Dr. feels like the Copaxone that I took for 3 and a half years was doing it's job.  Yay!!    But, since I had to get off of it in May due to injection side effects  (don't ask! not a good time!)    he is giving me the choice between Teriflunomide and Gilenya (if anyone knows how to pronounce that last one clue me in)   So Yay!   An oral med!!


So now I have to look at side effects and effectiveness of these 2 drugs and decide.  My Dr. did say one causes hair loss.  hair loss???  Jeez, I don't have enough as it is!  Hmmmmm, gonna have to research these for a couple of weeks.  

For anyone who has MS or knows someone with MS I can't stress enough on the danger of infections.   Danger meaning an infection can cause an exacerbation.   So, try and keep yourself healthy!  Exercise!  Rest when your body says to!

MRI Fun

So it's that time of year.  The dreaded annual MRI.  This will determine for me if I will be ditzy and loopy and unsteady  for the next year or if Copaxone has put a damper on any new lesions.   It could go either way.
My husband says who can tell??  "Your loopy and ditzy anyway"     True.   It's nice to have an option like a disease to blame it on!  


My neurologist is fabulous.  We love him so we drive 2 hours bi-yearly for my visits.   This visit includes the MRI so off we go at 6am.     Arrive on time (yay)  and walk into a freakishly cold yet humid waiting room.  Bizarre.  After filling out my forms there was a wet film on my skin.    Ugh.  And my Dr. appt hairdo (you know what I mean)  is toast.   I have been to this facility before and usually the experience is friendly and speedy.   Hmmmm not today.   After a 30 minute wait I get called back.   After another 30 minute wait I finally get in MRI machine.  All the while I keep mentioning I have a Dr appt shortly.  

Did I mention my non friendly nurse/tech person????   I hop onto the FREEZING table and have to ask for a blanket.  (usually a warmed one is waiting for you)    With very little talking I am strapped in and off we go for 20 minutes of clanking, boinging, annoying noises.    I'm then pulled out to get dye injection.   Here's  where the fun begins.    The nurse person asks which arm is better???    Um, I've had both used so I would prefer a professional answer that one.     After using the rubber band tourniquet from hell (which has grabbed every hair on my arm)  Jab number 1.   "Oops, nothing there"   Seriously?  Felt like she was going for bone marrow.  Then the slapping begins. Not gently taps to get a vein up but an all out girl slap on both arms and both hands.  She slapped my hand so hard my back arched up off table and she asked "does your back hurt"?    No, but you slapping the shit out of the top of my hand does.    (All in my head of course)   Jab number 2   "I think I got it"


After all that  ( I have the bruises on my hands to prove it)   My Dr. called and said we would have to reschedule because he had a flight somewhere .   Freaking great.   Another drive to Nashville next week all due to the Imaging place.   Oh, well.  Do I really want to know what's on that disk in my purse???    YES!!! 

Update on this next week :)

Brain Fog Week

I am declaring this Brain Fog Week.   This is one of my worst weeks experiencing fatigue and brain fog.   For those of you with MS, you have probably have suffered through this symptom.  For others, it is not simply "being tired"   (wish that it were!)    Think of the days when you pulled all-nighters.   Ok, now pretend you did 3 of those in a row. Oh, and let's pretend your not a 20 something that could do that easily.   Ok, Ok, now let's say your a 40 something year old.  And you had 3 all-nighters in a row.  And you now have to go to work and have a big meeting and then you have...........

See!  It is so hard to describe how this feels!   To me it feels like you took a sleeping pill when you woke up.  But then when you try to rest you can't sleep. Your brain is muddled and and you feel thick headed and slow.  Even physically it feels like you are trying to walk through knee deep mud.

I can always tell when I lose people in trying to describe MS fatigue.  I ramble on about how if feels and they already have that look like "oh, she's just tired"!!  It can be rather frustrating.

So, to those of you who have experienced this I say "Happy Brain Fog Week"  and hang in there.  For those of you who have not I say "I'm off to take another nap"  :)

My Fab Life with MS: MRI time, Brain Fog, Fatigue

My Fab Life with MS: MRI time, Brain Fog, Fatigue: Only 10 more days til MRI time.    I always am nervous and excited for these.  Excited to see if my disease modifying meds are working and n...

MRI time, Brain Fog, Fatigue

Only 10 more days til MRI time.    I always am nervous and excited for these.  Excited to see if my disease modifying meds are working and nervous about wondering if I'll have 20 additonal lesions on my brain (oh my).

Nothing to do but keep moving forward.  Hey, maybe that's why the MS Society keeps saying that!   Stay positive.   Well, as much as you can.

I have had the worst brain fog, fatigue lately.  For days I wake up feeling like I never slept and sleeping again within 2 hours.  Then getting sleepy again in afternoon and having a 3 hr nap.   My name's not Rip Van Winkle.  I wanna stay awake and not be foggy!   Much to do!  My neurologist has put me on a vitamin supplement (whose name now eludes me but it begins with a C....) to help combat fatigue and fog.  I've only been on it a week but don't think it's working since I can't remember the name of it.  And yes, the kitchen seems miles away to go look at the name!

My only advice on fatigue and brain fog (from experience)  is don't try and fight it.  Or work through it.  Most of the time for me it makes it worse.   If I just relax and let it take it's course I find that if I do that I am able to do my most important tasks of the day.  Maybe in small increments but I'm still able to do them.  

Good Luck and I hope you have a fatigue and fog free day :)

How's Your Day?

How your day??   Sometimes we MS'ers get wrapped up in our own little MS bubble filled with Dr appointments, fatigue, pain, stumbling into door frames (that was me this morning!!) just to name a few that we forget to see  how others are doing.   It makes me put my worries on a back shelf when I hear of others who have much more difficult issues.   It also (in my case)  makes my symptoms not feel as bad.   When I'm just sitting at home sometimes I feel worse.  When I'm around others in some cases I feel uplifted and revitalized mentally.  

So, with that being said how is your day? 

:) Teresa

MS pain, what a pain

Today, I am having a burning stinging pain in my neck.   Hmmmmmm MS pain or just a pain in my neck?  Oh, the joys of determining MS symptoms between "hey I'm just getting old" symptoms.   This pain has been off and on for 3 years so my neurologist thinks it's MS pain.  I'm still up in the air on that verdict.  I have been prescribed carb something which is a anti-convulsant.  For pain.  Now, I'm not a Dr.  but I dont have convulsions.  What I do have is pain.  a burning stinging pain in my neck.  Have I mentioned that???    Can't I just get a shot or something???  Oh, the joys of MS.  I understand starting at the bottom and working our way up through medications but c'mon!!  It's a BURNING, STABBING Pain in my neck.  Guess I'll just take TWO MORE Tylenol and go to bed.    :) 

Families and MS

Families can be your biggest supporters in your MS life and sometimes they can be the most frustrating.  I'm sure there are some of you shaking your heads yes!  I adore my family.  But there are times that is seems we aren't on the same link.   I refuse to blab on and on about my MS at every family get together.  I will not talk about it unless asked and even then if I'm have a super day I will brush it off and switch topics. 

Does it ever feel like on your worst days no one gets it?  Or on your best days someone will just hover over you like a nurse? 

There are just some days where I don't want to answer the phone, or come over, or even discuss how I'm feeling.  That's just the way MS rolls. 

But,  then I get flack for not answering my phone or wanting to go do something.  Hey people!!  there are some days I have MS fog  (NOT FUN) or anxiety because my arm and leg are numb. Or just trying to save up my energy to take care of my teenagers and finish up the day.  Don't take it personally!!!

On my good days I am the first to get out there.  Who wants to do anything?? 

My husband is notorious for asking me if I'm ok on days when I'm fabulous and not noticing when I'm "down". 

After several years of feeling family guilt I came to the conclusion that maybe they just don't know how I'm feeling.   Bingo!!!   Worked like a charm.  Now, all I do is say great!  when someone asks me how I'm feeling and when I'm not I will let someone know.  My family is the best and is a great support team.  If you don't have support at the right time it can be frustrating.  Talking with someone (either in your family or not) can really help the way you cope with MS.  

My link to MS Connections with National MS Society



The above link is to my MS Connections with the National MS Society.  I am an online peer for the newly diagnosed.  Feel free to contact me about MS questions!! 

I had another person or should say acquaintance today who proceeded to tell me "You look great!  You wouldn't even know you have MS!"   Now, I'm never sure but should I be annoyed or complimented???   It's great that "I look great".   I guess.  Is it a relief to that person that I look "normal" to them?   Am I being overly sensitive and should not take it any way.   (That's what the hubs says)  I guess my thinking is that I'm worried to death about my upcoming MRI,  I'm worried that my Dr. has taken me off Copaxone and we are waiting for a new disease modifying med to hit the market "sometime in Sept." My  left hand is as strong as my right hand, the left bottom portion of my face is numb as well as my right foot.  I also slept 3 hours this afternoon (unvoluntarily) and am still in a fog all just to hear "You look great".   Reading back over this it sounds more like my personal MS pity party.  I am grateful that people look at me the way they do.  I am grateful that no matter how my week or day was prior I am still able to "pull it off"  when I would really love is a cane and a couch!!

Oh Joy,   Only 21 days til my bi yearly neurology appt with an MRI.   Let the anxiety sink in!!   Will the Copaxone have been working or will my brain show new swiss cheese lesions?????    Some days I feel as dull headed and dumb as dirt so I assume that there are more lesions.   If not it would just mean that I am naturally dull headed and dumb as dirt!!!!   I vote for the latter. :)    Was just put on some new kind supplement for fatigue.   Curious to see how that works.  Also, Tegretol for stabbing,  burning pain in my neck.   Did I mention the STABBING, BURNING PAIN in my neck.  Some days its here and cannot even get into a comfy position to combat it.  Some days it is blessedly gone.   The Tegretol is an anti-convulsant med that builds up in you system and "might" show pain relief in a few weeks......Hmmmmmm  not digging the operative word "might" and also good to know that I won't be having convulsions.  Not that I ever did!!!!  MS is always fun about taking drugs for other things.
And lucky me has the Fatigue Fog today.  It's only 830 am and I am fighting it with all my might.  So guess I'll leave my nightie on :(    As you can see I am definetly feeling salty and rather shitty about my MS today!!    Oh, well hopefully by afternoon it will clear up. 

Welcome!!

Hi!  Welcome to My Fab Life with MS blog!   I figured since I blog all day in my head basically that it might be good to free up some space!!  My name is Teresa Hermann and I was diagnosed in 2008 with Remitting-Relapsing Multiple Sclerosis.  My left side from my forehead to the tips of my fingers went completely numb and my husband and I thought it was a stroke.  I was so unbelievably fortunate to get a Dr. in the ER who ruled out a stroke but was determined to pursue the symptoms.  Within a week he had an appointment for me with Dr. Harold Moses at Vanderbilt MS Center in Nashville.  Within 2 months of my symptoms and numerous tests later (the lumbar puncture wasn't so bad!!)  I was diagnosed with MS.  I have heard of people suffering for years before they find out they have MS so I consider myself blessed to find out so quickly!!   After going backwards through symptoms and years past I am thinking I have had it since my mid 30's.  Of course that is just a guess.   I have been on Copaxone injections for 3 1/2 years and I have an MRI coming up in a few weeks so I am anxious to see how it's doing.   This summer was rather difficult.  I have found the true meaning of "MS Fatigue"  Wow.  Not fun.  And have had balance and numbness issues for last month.  After the first year of diagnosis being terrified of a life in a wheel chair I have figured out (somewhat) what to do to head off or help symptoms.  I also have most importantly cut out the majority of my stress by simply not surrounding myself with negative thoughts or people and working hard to not think much about stuff that stresses me.  Hard but worth it!!!   I also am now a Online Peer for newly diagnosed MS patients through the National MS Society which helps me know that I'm not alone!!   With all that being said, Welcome!!