Hope springs eternal

A few days ago, my family and I went to a conference on MS titled "Is it Me or My MS?"  Their was a doctor answering questions and informing us on the symptoms and progression of MS.  Of course, it was sponsored by a drug company so the doctor was not allowed to talk about medications other than the sponsored medication.
When we first arrived, I looked around to what was a very small amount of people.  I was a little surprised for two reasons.  1.  There was a free dinner and who wants to do dishes right?  2.  I know the more I deal with this illness, the more questions I have.
We looked around the small conference room and at the corner back table, there was a lady in a wheelchair with two people on either side of her motioning me over to sit down at her table.  At first, I thought maybe she thought I was someone else, but I decided that would be our table.
Once we sat down, I realized how severely disabled she was.  She was very hard to understand.  She was confined to a wheel chair and was very inhibited in many other ways.  She was unable to drink out of a regular cup and was using a childs sippy cup.  Her two friends had to help her eat.  She dropped her fork at least 5-6 times during the meal.
I have to admit that at first I felt a little uncomfortable.  I am naturally pretty shy and have a poor comfort zone around new people, but this was not my main reason for being uncomfortable.  My main reason was related to her stage in the disease we share.  The first thought that came to my mind was is this my destiny?  Am I going to be like her?
Through our very broken conversation, I found out that the main reason she was there was to find out if there was any medication she could take to get out of the wheelchair.  I found out that she had only been in that wheelchair for a few weeks.  I also found out that when she was at my stage, she was not compliant with her medications.   Meaning she had no desire to take the medication (shots) she was prescribed.  I did not ask her why, but I did reflect on those days I skip my shot because I grow so tired and weary of taking it daily.
At the end of the conference, what I took home from this woman, is that no matter at what stage you are, you keep hoping.  One of the questions she posed to the doctor was if she could start taking the sponsored medication to help her get out of the chair.  I felt sad.  She was beyond the point for these medications as their purpose is to delay us to get where she is.  The doctor's response was to defer her to her doctor.  I understood what that meant and my husband mentioned it later as well.
Even though she was already progressed, she had hope.  She had hope to be able to walk again.  Hope to be independent again.  Hope for a cure.  Hope to heal.

http://youtu.be/e8HgAVenbUU

 

Sum it up

Well it has been a few months since I lasted posted, the whole summer actually.  Main reason is that it turned out to be a pretty busy summer.  I was "sick" for a little part of the summer, regressed to using a walker, but am now happily back using my cane.   However, I did buy me a new snazzy walker with 3 wheels.  Turns on a dime.  I actually think I walk better using the walker, but it is not always necessary.
I am glad that the heat is being "turned down".  My body was not happy with it.  Spent time indoors, but our swamp cooler was not keeping up with the heat of the day,so I watched ALOT of t.v.  Boring. 
August was spent with my parents who happen to have central air.  Oh glorious central air, why have thee forsaken me.   I LOVE CENTRAL AIR.  Here is the funny thing about me though, I get cold.  So here I am with the glorious central air, covered up with a flannel throw. 
Now the temperature is perfect.  70's.  I love the 70's.  I can function so much better.  Yay for the 70's.  Still cover up though :)
I did get to go on vacation with my family.  It was wonderful.  Took alot of naps to be able to get through each day.  Nice to be away though, get out of the house and all.
Hmmmm.....so the time I did spent with my parents, I got fed ALOT of food.  Oh boy.  My pants are not happy with me right now, so now that I am back in town, I will be going back to swimming and working with a trainer to help me.  Bathing suit......ARGHHHHHHH


Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.


Philippians 4:6-7

Sunshine and roses

I am tired.  That pretty much sums it up.   Well that and maybe I slightly overdid it yesterday.  So I am tired with a clean house :)
I am sitting here looking through my screen door at my roses and flower garden.  How nice it must be to bloom in the sun.  Having the warmth spread all over your face and soaking it all in.  Sunshine is not my best friend now a days.  Well let me reiterate, heat is not my best friend.  MS and heat = vision fade in right eye, an exacerbation of clumsiness, balance problems, increase in leg fatigue, numbness and tingling, exhaustion within minutes and the best one is the drunken speech.  I bet the flowers don't have that problem.  Maybe they do in a way.  If you don't water them, they droop.  Maybe MS is like a watering problem in the heat.  If you can't cool down you droop. Hmmmm, interesting.
Still, love the sunshine.  Now I enjoy it in the early morning or as it is setting.  Beautiful times of day.  Bought a cooling vest, but that didn't really work out so I can enjoy it from a distance.  Watching the butterflies on the flowers.  Our adopted lizard who has made our garden his home; we named him Bob.  He comes back every year.  The beautiful and tantilizing colors make me shine just like the sun.  My inner sunshine comes out.



http://www.youtube.com/watch?v=E1fzJ_AYajA&ob=av3e

Ruby Red Slippers

Paying a little for the overdoing yesterday. It's a hard balance between participating and surviving.  When my energy is up and I can do more things, I just can't help myself.  Still striving for my yesteryears.  So today, I am exhausted.  Managed to do a couple loads of laundry and had my daughter take me to the store for some household goods, then it was everything I could muster to cook dinner.

It's funny the silly things that come to mind when you are deprived of certain things.  So a while back I posted about an AFO I have to wear related to some mild foot drop.  The problem with it is the design is strictly for tennis shoes that have removable soles.  The AFO fits under the sole, which means cute sandals, flip flops are completely out.

Here's the thing,  I like cute shoes.  I never was a high heel gal, but cute sparkly shoes I love.  Today I went to the store in cozy flip flops and it makes so much harder to walk.   My leg gets so tired and my cane gets more of a work out.  Darn it, I want Ruby Red Slippers like Dorothy had.  Ones that can take me over the rainbow where I can be "normal" again, not to mention stylish.

I have settled for wearing Vans.  They actually have sparkly red ones, maybe I will get them.  They can be my new Ruby Reds.  I guess sometimes you have to create your own rainbows.  I am working on that. 



http://www.youtube.com/watch?v=PSZxmZmBfnU

Day to Day

It seems I am in a bit of a remission period.  I am grateful, but I can't help but waiting for the floor to fall out from underneath me at any given moment.  I have had steady improvement since my last big incident in January with the only setback being a slight gallbladder incident.

Today I spent the day cleaning.  Slowly.  I remember the days when it would only take me a few hours to clean the house top to bottom spotless.  Now I am slow and steady with frequent breaks but I am happy with that considering a few months ago it was an impossible feat.
I wonder if that person I used to be would understand the person I am now?  It seems that I would never sit still and now I sit around so much more than I can stand.  

It makes it so difficult for me and somewhat embarassing to know that I am not working.  I worked so hard to become an R.N. and I long so much to be one again.  I still have my liscense and it has been less than a year since I worked, but I miss it so much.  I look at the job openings and wonder if I will ever be that person again.  I think that doctors don't understand how much more encompassing this illness is.  It's just not the physical but everything in your life.   NOt just what they can test with their little instruments.  They can tell you that you seem better, but it's so much more than that.  Its the day to day struggles that they don't see.  Sure, today I am walking, talking better, but no way I can have the life I once had.  The life I was so content with.  The one I long for.  They are not here to see how hard I try to keep that aspiration by working on my stamina.  I can hardly do more than a few hours in the house with out multiple rest periods and it's so frustrating.  I want to be a nurse again!!!!   I want to work.  I want to have friends to talk with on a day to day basis.  I want that comradarie.  I want everything the way it was, but for now I am living day to day.
 

swimming with your head above water

When I first started this blog I must admit that I had some delusions of grandeur. I figured everyone I know would be reading this and become instantly inspired. Well that certainly had not been the case at all. I can't even get my own family members to read it so I have just decided to let it be what it has evolved into, an online journal.

For the first time in many many months, I have been feeling good. I went from using a walker in January walking only a few feet to not needing a cane in the house. My cane is still my companion once I leave my front door, but my stamina has improved so much. I am or as tired as I have been, still have to be careful about doing too many tasks. I tire very easily. The hot season is near by and I don't need any setbacks.

It is so weird to think that a few years ago I would never have thought about these things. My walk was alerts brisk and I rarely sat still. I was a working machine and nothing could stop me. That was until multiple sclerosis started to rear its ugly head.

I have decided to do a little more for my body. My biggest fear is to end up in that wheelchair or worse. I am back in the gym swimming. It is such a strange sensation because there are parts of my body that I have no control over. My left foot for example just kind of flops around and does it's own thing. My left hand, I can't control some of the fingers and the spread apart when I am swimming. This is the nerve damage that I may never regain but I am going to do my best to prevent what I can. I can tell that my left side is so much weaker as it tires out so much faster, but slowly but surely I hope to regain that strength. For now I am a work in progress and I hope that this disease will leave me alone for awhile, actually forever sounds good to me! The other thing I hope for is the courage and mindset to keep going to the gym. It's hard and I dont want to give up.

MS Hug

Hugs.  When you think of a hug, you imagine something warm and comforting.  A MS hug is far from comforting; it's something that you dread.  It comes on all the sudden and can last for a few minutes or for hours.  I posted the details of what causes it and what it can feel like in the previous post.
For the past few days and a couple times in December, including one on Christmas day, I had the pleasure, errr.....rather displeasure of feeling this hug in full action.  I have always had an uncomfortable feeling at times around my waist, kind of like when you wear pants that are too tight. 
 But the past couple of days, I have woke up with the worst kind of chest pain imaginable.  Picture the scene in Indiana Jones and the Temple of Doom where the dude reaches into the characters chest and squeezes his heart out.  That is the only imagary I know how to explain what I felt.  I felt like something was squeezing my heart and would not let go. 
The previous times I had this it only lasted about 20-30 minutes, but a few nights ago, it woke me straight up from sleep.  I had previously gone to the hospital in December thinking I was having a heart attack, but everything came out normal, so this time I decided to wait it out.  An hour past, then 2, then 3 and the pain was so excruitiating.  The pain is so bad that it makes me want to vomit, or nearly vomit.  I tried pain medication with no effect.  We finally called 911.  I just could not take the pain anymore.  Nothing I did was making it go away.  My poor husband just did not know what to do. 
I get to the hospital, the did all the cardiac tests, and the doctor cleared me from any heart issues.  They determined it was the MS hugs.  I received a boat load of IV pain medication in order for the pain to go away.  I slept away the whole next day.  Last night it came back again.  Awful, horrible pain.   Worse than giving birth to my 2 children, and I did not have pain medication with them.  Last night, luckily, it only lasted 20 minutes and they had prescribed me pain medication. 
I fear that pain coming back.  I wish that pain on no one.  I can't imagine any pain worse than that and if there is, I hate to even think of it.  I hope that none of you ever have to experience it.

"Chest hug" is not life-threatening : National MS Society

"Chest hug" is not life-threatening : National MS Society