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!!!