You can do it!

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

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

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

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

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

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

So off we set to the airport.

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

One obstacle that wasn't an obstacle down.



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

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

 

 

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!

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!

"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!