Living with MS? Me too...Let's talk.

I've Had to Learn that Energy is a Commodity-How I Spend it Counts...

2012-02-22T18:21:00.000-05:00

        Over the years as my MS has progressed I have
gradually learned how to use one of my most important
commodities. I am refering to energy levels...Before arising each morning I have no way of gageing what that EL is going to be.

     If I have an appointment or activity planned, then I know I MUST try to
start my day out cautiously until my body "tells me" what it can or cannot accomplish. Usually, I'll spend a leisurely morning, and as time progresses I will go ahead and shower. Sometimes, after finishing just that one simple activity, my body says-"ok, we are going to sit now and take a 15 to 20 minute rest". I have learned that my body will dictate what it will or will not do. It isn't always a pushing yourself thing, because I have learned the hard way-if I push too far, I will pay for it by having to have someone get my butt off the floor. I always end up in trouble when I think I know best...of course there are times when I push myself, but I end up with too much pain and I will not be able to do the "necessary things" that have to be done.

     Today for instance, I felt quite well when I got up, so I spent the morning sitting in the sun on my back deck to soak up some Vit. D. I appreciate being able to do the simplist things. This afternoon I really wanted to do a bit of dusting, but, no, it didn't get done. I have had to learn to not be frustrated at the things I can no longer do. Frustration brings too much negative energy and my energy supply is way to low for that. I must admit, this has been an ongoing process for over 20 yrs. I will never give in or give up, but I will respect this body God has given me and take care of it to the best of my ability...

     On my so called "good days" (and God knows I appreciate everyone of them) I will dust , then sit for about 20 minutes, do another task then sit 20 minutes and on and on it goes...By 2 p.m. my body tells me-"we are finished for the day". Did I get all the things done that I wanted to get done? Of course not. But, I felt so thankful and happy about the things I did accomplish...I have truly learned how to be happy no matter what MS throws at me. I am so blessed in this life. I have a wonderful husband who is my very best friend, great children and grand children and many old friends I've had for oh so many years and many many new friends I have met on FaceBook.

     So, I'll keep spending my energy wisely so I can have the best quality of life I can muster. These are ajustments we all with MS or any other dibilitating Illness learn to make as time passes and we adapt to all our new challenges as they come our way.

     So, until next time may our heavenly Father bless each and everyone of you. Sending Love and hugs your way...

Timing Energy Levels
throughout the day

Symptoms of Autoimmune Diseases: What to Watch For -

2012-02-17T18:21:00.000-05:00

Symptoms of Autoimmune Diseases: What to Watch For -

MS Messes with my Dignity...Or-Am I Looking at it all Wrong?

2012-02-15T19:28:00.002-05:00

I am by nature an upbeat person-but in the 23 years I've lived with MS, I have found that this illness can really have an effect on my dignity. Before MS progressed to the point where it was causing obvious balance, cognitive issues etc. I was an executive and presented myself in a professional manner at all times. As time has passed, I have had to learn that shoes and bags don't "have to match", caftans have replaced my business attire, and I can no longer style my hair or apply make-up as well as I once did...these issues of course, aren't "life altering things" but were always important to me. But, more importantly, MS has made it necessary for me to "re-define" my style.

At first, it truly effected my self-esteem, as I hardly ever felt well "put together anymore". And, during conversations, I can't find words to finish a sentence. I wear a high brace on my weak leg, and it requires not so pretty shoes. Can you imagine putting on a cocktail dress with a pair of sport shoes, haha. I don't think so...

Even though my husband is wonderful and has taken over the household cleaning, laundry etc. I still after all this time, feel so guilty because I don't feel as though I pull my weight, as the old saying goes.

When I use to still drive and would do the grocery shopping, I would be bringing the bags in and before I could finish I would completely wet all over myself. I'd have to go in and shower before I could even think about putting the groceries away.

So, I ask-where is the dignity in that? Darn MS...One of the synonyms for dignity is poise-well, believe me, you can't have much poise when you'er walking with a brace and using a cane-and praying-Dear God, please keep me on my feet...And, as the girl in the graphic, I "do" hold onto walls in the house when necessary.

Well, MS can and has taken quite a bit of my dignity, but it will never take away any of my spirit. I love and appreciate each new day. So, I'll wear my caftans, brace and ugly shoes, but I'll always hold my head high because God has given me this life to live, and I above all else, I want to please him and have him tell me at the end-my daughter you have run the good race...

Gratitude-My Heart is Always Happy-Part 3

2012-02-10T12:11:00.011-05:00

If you read parts 1 & 2 of My Heart is Always Happy you will certainly understand the title to this last post dealing with that week in my life.

I promised to tell you what happened when I kept my PCP's appointment on Friday after returning home Wednesday of that week. I was still totally manic, so when she came into the room they had me in, I cautioned her saying, "If I interrupt you, please forgive me, cause I'm telling you I can't stop talking". Within 10 minutes, she said,"Sandra, will you agree to go over to the Psych at the hospital to be evaluated"? Well, of course I agreed I would if she thought that was what I needed to do.

This was on a Friday during rush hour, and my daughter and I were on our way over to the hospital. She called my husband who was on his way from work in Virginia Beach. He asked if we were on our way home-and Cheryl paused and said "well, not exactly". She went on to explain we were on our way to have me evaluated to see If I needed to be admitted to the psych ward or if they thought it was okay for me to return home.

While sitting in the waiting room the receptionist kept asking my daughter questions concerning me. It aggravated me that she didn't speak to me-so I told my daughter to tell her if she wanted to know anything about me, to ask me...Then, I noticed that people who passed me as they were leaving the building never looked my way at all. I found this to be so obvious. I'm use to looking people in the eye and nodding hello or at least smile. But, they finally called me in to the office to have a conversation with the lady who was going to evaluate me.

I explained to her that I realized that I was manic and couldn't stop talking and couldn't sleep because my brain was stuck on overdrive. We talked for a while and I realized she mainly wanted to know if I was a threat to myself or anyone else. So, I explained a time in my life when my autistic son(at that time was 4 years old) threw the 19" TV in the floor. I had gotten so upset that I balled my hand up in a fist to hit him-that is when I sent my other son next door to get my neighbor, because I would never hit a child who wasn't responsible for what he had done. ( My son Stephen and me is another whole story in itself).

In any case, she told me I certainly could go home, but set me up an appointment with a psychiatrist the following Monday. Monday came, and after my discussion with the psych she told me I didn't need to return, but did give me a script for a med. I told her I knew they were concerned that after the manic state subsided they were pretty sure I would go from very high to very low-I told her I would balance out, because I have never been depressed. It isn't part of my DNA.

The next day I took my med. she had given me, and I sit staring out the window. Right that minute, I knew I was not taking the script and was calling my PCP and tell her I was going to stop taking all the many scripts the doctors had me on. After about 2 weeks I was back to normal-no over the top mania...After sending me a "wake-up call", I knew God would take care of my state of mind.

From that day on, I take only meds for high blood pressure as it runs in my family. I take no MS meds. I do however, take vitamins-especially Vit. B12, D3, and Bcomplex. In part 2 I listed all the meds they had me on. I in no way am recommending that anyone stop their meds, it was my personal choice.

As far as my MS symptoms-I have learned to adapt to a new way of doing old things. I have Primary Progressive MS and I know each year, I am getting a bit slower, but deal with each day and make it the very best day possible.

We all make choices in life, and I pray and ask for wisdom that will prompt me to make the "best" choice for me. God never lets me down, and my heart is abundantly filled with happiness each new day.

Until next time, I wish you all light and love. God be with you and your loved ones. If you

'MRF Announces First Biopharmaceutical Partnership with ENDECE Neural, LLC'

2012-02-08T22:24:00.000-05:00

'MRF Announces First Biopharmaceutical Partnership with ENDECE Neural, LLC'

For People with Progressive MS : National MS Society

2012-02-07T12:02:00.000-05:00

For People with Progressive MS : National MS Society

My Heart is Always Happy-Part 2

2012-01-26T16:18:00.008-05:00

When I woke up Saturday afternoon on life support in the hospital I truly didn't know what to think...The nurse told my family in the waiting room that I had opened my eyes and they came into my room with the most beautiful smiles I had ever seen...

I had just heard my husband telling me to come back to him and he would take me anywhere in the world that I wanted to go. So, God sent down "his wake-up call", and I came back fully awake and as far as I knew I was fine, had been fine, and didn't know what had happened. I motioned for someone to get me a pen and paper. So I started writing down questions and they explained why I was there etc.

They left me on life support until they took more blood work and then after a couple of hours the doctor sent orders that I coud be taken off the life support and just be observed for a while to be sure I was ok...

They sent a speach therapist in and she asked me if I knew what day it was...I do remember replying "that must be a trick question-I laughed and pointed at the calendar on the wall, and said anyone could see it's Saturday...".

Within an hour I was totally manic...it was like my brain had reset itself on the most outgoing, funny, and happy setting. It's a bit difficult to explain, but I'll give it my best shot...I loved everybody, laughed at everything, and joked with everyone.

They determined that I was in the "okay, she's going to make it" state so I could be moved to a regular room..As they rolled me to my room I was talking to everyone at the nurses desk, those walking in the halls, and anyone else we passed on the way...maybe it was the two blood transfusions they gave me just before leaving Intensive care...in any case-I was one happy somebody.

When they got me settled in my room, I was still talking ninty miles a minute as the old saying goes. Wasn't talking to anyone in particular, just anyone who would listen. I had not be given any meds that would make me as "up" as I was. I was just over the moon with happiness.

When my primary care physician came later in the day I told her she needed to gain some weight (she was pregnant) because that baby needed some nutrition. She just smiled and promised to eat more. I had already been her patient for many years so she knew "me" very well. I also told her I wanted to go home the next morning. Knowing me well enough to know what to say-she looked at me and said "we'll see".

The next day (Sunday) a rep from my insurance came in to determine what I would need once I got home. Knowing my history with MS she ordered, a walker, a shower chair, a bedside potty and lined up 6 weeks of Physical therapist and occupational therapist to come to my home three times a week. So, all that was taken care of

All was well and I was getting rest for two days and then they sent a PT person in to see how far I could walk. I did pretty good with his help and a walker. So, I guess I passed the test. But, let me tell you, they took so much blood work over those two days that I asked them if they were trying to get enough blood for payback for my 2 transfusions...

Tuesday night around 2:00 a.m. the hospital had a fire drill alarm-doors were slamming everywhere and noise everywhere. So, when my doctor came in Wednesday morning I told her to get my release papers cause I was going home to get some much needed sleep. She knew I meant-I was going home_ so she agreed because my grown daughter would be there when my husband was at work. The one stipulation was-I had to go to her office on Friday for a follow-up.

I died 3 times Thrusday and was home on my couch by Wednesday. I felt fabulous.

But, I had not lost any of the manic state. I couldn't sleep and I talked 24/7. I know I was driving my poor husband and my daughter nuts, but I couldn't control my state of mind. On Sunday a neighbor stopped by to visit after church. Ray told her to go in the bathroom to see me. She came in and I was sitting in a chair refolding every towel, washcloth etc. in the linen closet. I wanted to get it perfect because if I had died I would be embarrased if people saw my messy linen closet. Now we all know that was just a bit over the top.

I want to explain where my doctor sent me on Friday when my daughter took me for my follow-up, but that's another story in itself. I'll talk about that later in another post.

It was determined that what sent me to the hospital was chemical imbalance, medications, and taking laxatives everyday...Even though I drank my normal about of tea, coffe, water etc. my body was getting totally dehydrated.

I want to make a list of the meds my doctors collectively had me on:

premarin .626mg
provigil 200 mg.
detrol 5 mg
neurontin 300mg
fesay 325mg
celexa 20mg
maxzide 325mg
protonix 40mg
klonepin 5mg
bextra 10mg
copaxone injections

I was also taking laxatives everyday which of course is another whole story in itself. It's called bulimia. I will write that story in a later post.

So you see-WHEN GOD SENT ME "MY WAKE-UP CALL" he waked me up about many things and my eyes are "wide awake" everyday.

I NO LONGER TAKE ANY MS MEDS. I WAS ON SO MUCH STUFF MY BODY DIDN'T KNOW HOW TO FUNCTION PROPERLY ON IT'S OWN.

I HAVE NOT TAKEN ANY KIND OF LAXATIVE SINCE THE DAY OF MY WAKE-UP CALL. I DRINK A CRYSTAL LITE/GREEN TEA-APPLE JUICE COCKTAIL THROUGHOUT THE DAY. I EAT MUCH BETTER NOW AND INCLUDE FIBER TO MY MEALS EVERYDAY.

I thank GOD everyday for my wake-up call and I figure if he was giving me another chance, I would do my part to take care of myself, and the only one body I'll ever have. I live everyday as very best I can, and take nothing or no one for granted. I am no longer manic-but I am still, happy, joking, loving, and sharing what ever gifts I may have to live the very best life possible and hopefully be a blessing to others along the way.

Take care everyone and I hope you have enjoyed my post. Until next time-I love all of you, and may God bless you.

My Heart is Always Happy

2012-01-20T16:47:00.004-05:00

My heart is always happy...I can say with all honesty, this is a very true statement.

I pondered for a few weeks whether or not to share this particular 7 days of my life with my readers. And then, my instinct was pushing me to open myself up to you so you will understand me better as a person. A person, like everyone of you who have many challenges in our everyday lives. That is simply a part of the human experience. We have all had disappointments, blessings, lost loved ones, when we have a disability, well, that's a tremendous loss. We grieve for what we have lost-the -us_ we have lost. But, I'll go ahead and begin my seven day event that awakened me to all the many blessings I have no matter what the challenges may be.

On the morning of June 6, 2002, as my husband got up early to get ready for work, he noticed I was breathing very irregularly as I was sleeping...he came over and woke me up asking me what was wrong. I had no idea what he was talking about. My daughter was at the house recovering from a surgical procedure, so he went in and woke her up and said there was something wrong with me.

He got me up off the bed and told my daughter to go into the kitchen and get a chair because I couldn't stand up. I told them I needed to go to the bathroom. So they pulled me in the chair into the bathroom. Sitting on the commode, I looked up at them and laughed saying, "you do know there is my rolling desk chair" setting right near the bed. Why didn't you sit me in that chair and "roll" me in here-and ya'll think I'm the one who needs to go to the hospital"?

That was a Thursday morning. I don't remember much after that. As for me and what I know is it's Saturday afternoon. 2 1/2 days later. I woke up on ventilator in the intensive care unit, and at first was alarmed because I had no idea what had happened or why I was on life support in a hospital.I remember I had tears in my eyes, and waited for someone to fill me in...so for the next portion of this story, I will be relating what the Dr's. and my family said had happened. I had totally lost 2 1/2 days of my life. I have a copy of all the doctor's and specialists reports pertaining to my stay there. I got that file out and read through it this afternoon, just to refresh myself on the details of my lost days...

I do want to state that I had had MS for ten years by this time-but, it was decided that this was NOT an MS episode of any kind-just wanted to clear that up...

From entering the emergency room around 9:15 a.m and being taken to ICU-I had coded three times-twice in the ER and once more being put in my room. This was a period of about 4 hours. They were able to bring me back to life all three times, of course, or I wouldn't be writing this!!

All of my immediate family were on the floor when they took me up and when they asked my husband to sign the papers to put me on life support,well,let's just say they could see his heart breaking.

Next-each organ shut down in my body one by one and every specialists was called in to evaluate my condition. I want to add here, that there were prayer chains going out across about seven states by then...Boy-it's great to be loved. By my family, friends and my heavenly Father, the great physician.

I was given antibiotics, different meds. to bring up all my chemical levels as they were all totally out of whack-so to speak...It hurts my heart to know how my loved one's were heartbroken thinking I was leaving them. So, for 2 1/2 days they sat, prayed and waited...

Then, by a miracle, everyone of my bodily organs, began to work efficiently...Yes-I am a miracle siting here telling you my story. On Saturday afternoon as I was waking up, I could hear my husband sitting by my bed and I felt his hand holding mine, and I heard him saying "if you'll come back to me I will take you anywhere you want to go, anywhere in the world". I still couldn't open my eyes or move yet, but I did hear the words very clearly..

I will leave my story until my next post...come on back and see what happens my friends. YOU will understand why "I am a happy me" . We are all the sum of our life experiences, and we all have a story to tell. I will fill you in in a few days. Love and hugs to each of you. And until next time-may God bless you and your loved ones...He sure takes good care of mine...

My MS Mis-Adventure

2012-01-10T18:21:00.004-05:00

I'm sitting here feeling like a train just ran over me...no broken bones-they just feel broken. Well, let me start from the beginning of my day.

I got up this morning feeling pretty well, had my coffee and breakfast. Just a normal morning...my husband had to run a few errands and asked me to just stay here in my chair at the computer, until he returned. I told him I was having a "I'm feeling well this morning so go on, I'll be fine"...

Next-I log into Facebook and tell all my friend's to have a really good Monday morning...within a few minutes, I have a lot of comments popping up letting me know-it's NOT Monday, it's Tuesday. O.K., so I obviously don't know what day of the week it is- could be worse, I suppose. And it did...

I decide to get up and go ahead and take my shower and maybe shampoo my hair. Well, I guess "my body" didn't want to go along with my plan, because in the process of getting up one of my "freak" accidents happened. See the trashcan sitting between my chair and my husband's chair? (Bet you were wondering why the picture of a trashcan is sitting in the top right hand corner). Somehow, between getting up and showering, I fell back, and ended up "sitting on the trash can". Weird? I know...so, not being able to just lift myself up with my legs, after a bit of strategizing with myself, I decided the only way to get back up would be to slowly fall forward onto the floor. My husband's chair rocks, my desk chair, swivels and also has rollers. No way, were they any help with attempting to "pull" myself up.

Once on the floor, I thought I'd be able to get on my knees and with my elbows on the seat of the big chair, I'd be able to be able to push myself up. Nope-didn't work! Chair just kept lowering too much as it rocked. So, getting very exhausted, I turn around and just sit on my butt in the floor, and began another round of strategizing mode. Just a note here, I can't crawl on my knees because it makes the bones in my knees feel like they are crumbling and is very painful.

Next, I decide to just scoot on my butt into the bedroom and hopefully, be able to get my elbows up on the bed and pull myself up that way...but, of course, by this time, I'm totally exhausted, so I lay in the floor and rest for awhile...

I have phones in all my rooms, but wasn't able to reach any of them..just letting you know why I hadn't called anyone for help...So, to sum this up-I took a deep breath and said-ok God, you know darn well, I can't do this by myself. Give me the strength to get myself up-so it took a few try's, but then-yay-success. I got up on the bed and stayed there until Ray came home.

My MS never notifies me in advance what choas it's going to bring me next...But, I just wanted to share with all my friends who live with MS day to day as I do, I understand what we go through, that is why all of you are in my prayers everyday, because I have no idea what "mis-adventure" you may be having on any given day.

I love and appreciate each and everyone of you. And remember, God is right there with you if you invite him on your journey...he'll get you back up evertime you fall or just stumble...

Until next time, keep hanging in there and appreciate all the good things/they can cancel out the bad things...

From Player to Spectator

2012-01-03T11:42:00.004-05:00

This photo was taken in 2001 at my home in North Carolina-Having this many family and friends was not unusual. I loved entertaining and planning events and get together's (with my husband Ray) of course. But then, as Director of the local Chamber of Commerce at that time-I planned county events for about 10,000 folks. But sometime between then and now something snuck up on me...it was such a gradual thing that I didn't see it coming!
Multiple Sclerosis was slowly but surely in my brain and making plans of it's on...I didn't send it an invitation but it came to crash my parties and change my life forever.I had noticed I had been falling and forgetting different things for several years, but I was always a "list maker" so I could stay organized. I didn't give it much thought at the beginning. (Just little things) in the past.
Well, the condensed version of this story is: it's a new year-2012-and I can no more plan big get togethers than I can jump over the moon. Darn MS is still messing with my brain and now my spine-And I know-it's an uninvited guest and just won't go away. I pray that in the near future that researchers will find a definitive answer to allowing me and all others to send this intruder on it's way into the abyss.
Until then-I'll have to be mostly on the sidelines and enjoy all the times my little grand daughters visit. I would love to get down in the floor and play with them. So, I'll be joyful just seeing them run and play and look my way with those bright blue eyes and sweet smiles and lots of laughter.
But, until then-I'll live each day adapting so as to experience the best quality of life that I, with God's help, can muster...
p.s. I want to take the time to wish my husband, wonderful family and each one of you a very blessed new year, and a big thank you for making my life and each day joyful...

Thank you for reading my blog and I hope you will click "follow" on my site. I thrive on all of your comments and support. Until next time-hugs to all.

Follow-up to: Faith and Resiliance enhances my daily Challenges

2011-11-10T16:26:00.001-05:00

Little did I know, that now, in 2011 my husband and I would be living in a lovely home just a few houses from my sister in Cheaspeake, Va. where I grew up. During the time between losing our home in N.C. and then moving into this particular home, several things had to transpire. My niece and her husband were waiting for their new home to become available, and I was praying that it would work out so Ray and I could live here in this house. Well, guess what? God was busy behind the scenes taking care of the timing for all of us. We needed to be out of our house in June 2010-and my niece found out they could take possession of their beautiful new home the first of June! Coincidence-I truly do not think so. We didn't buy this house, we are renting from a lovely lady I have known for many years.
But, you see, it's the time we are "going through" that requires so much resiliance. That year when we realized our lives were changing forever, we had to hold on and wait on God. Is that easy-of course not-we are only human.
I must be honest and admit that I miss just going out and shopping and getting anything that I want...we girl's do love to shop. But, I have everything I need and lot's of stuff I probably don't need..ha.
Well to sum this up-our faith and resiliance got us here. God got us here...the week-end my niece moved into her beautiful new home we moved in...we had a giant yard sale-got rid of many "things" I had bought and had really never "needed" in the first place.
I have learned to appreciate all the little things-and the big things. Several of my old high school friends live nearby and come to visit, I enjoy that so much.
We seem to manage to "get through" different life changing issues, such as a job loss, or a major illness if we just trust in God and trust ourselves by being positive and "expecting" good things to happen. To some, this may seem a bit like a cavalier attitude, but I have, like each of you, faced tough times and situations and have come out in a better place in our lives-my children and their families are all within half an hour of us, and visit often.
I am enjoying this new chapter of my life-MS poses many challenges, but thanks to a wonderful husband and a beautiful family, I am up to the task. Until next time-God bless.

Faith and Resiliance enhances my daily challenges...

2011-11-07T15:53:00.001-05:00

In the last five years I have had to development a high level of resiliance.That and knowing God works behind the scenes has brought me through some major life changing situations...It is a fact of life that all of u,s at one time or another, will face issues that will require all the "bounce back" we can muster.I am going to share the condenced version of my last few years.
In 2008 the owners of the company my husband worked for, decided they would retire-just before the wall street fiasco...Ray has been in construction for 40 yrs. and was a master field superintendent. As you may remember, the bottom started dropping out of businesses hiring or expanding because of lack of confidence in our economy-
To make a long story short-within the following 2 years, we had to tap into our 401K to make ends meet,then my husbands unemployment ran out. I however, was recieving my disabilty check each month. The end result of these developments was that we lost our home we had loved and put out heart and soul into over 24 years. We had never been late on a mortgage payment, but that didn't matter. We ended up in foreclosure. So we, in a very short time, went from an income of approximately $130,000. a yr. to Ray turning 62 years of age, and so he had to take early retirement.
So, now we live on Social Security. Major change. But, I now realize that God always knows what he is doing and why he is doing it. Our timing isn't his timing, but we trusted in God andhad enough faith to know God would lead us to where we were suppose to be in a new chapter of our lives. I will share more of this story in my next post. Come back and see how God changes things and why I do not believe in coincidences. God bless. Til next time.

My computer: Takes me Across the World

2011-10-28T18:31:00.001-04:00

After having to resign from my career, (economic development), due to disabillty related to having Multiple Sclerosis, I found that I truly felt isolated, uninvolved with the world. I have to honestly admit it took me a full year to make a real transition, to spending most of my time at home. My husband and I were empty nesters, and he was still working at the time. Even though I could still drive at the time, my family and friends were all still working each day. A person can go to Walmart only so many times a week!! I gained 20 lbs. that year, then got angry with myself. I never in my wildest dreams thought I'd be disabled. I was an "exercise nut, before it was the "in thing" to do. But, here I sit, me and my computer, I've even given her a name-SUNSHINE-and 10 yrs. later, I've finally opened a whole new world for myself. Sunshine and I are best buddies. She has introduced me to so many wonderful people who have become long distance friends, and to many amazing destinations across the world. So, it is my hope that if you are sitting at your computer, whether she has a name., or not, I hope you will chat to me as we travel this journey together.

Check out the About Multiple Sclerosis Foundation

2011-02-15T10:23:00.001-05:00

I thought you might be interested in the About Multiple Sclerosis Foundation. You can view it at, http://www.msfocus.org/about.aspx

Being diagnosed with MS was "good news"!

2011-02-09T11:26:00.004-05:00

Here I am on board the criuse ship traveling to Alaska. MS hasn't taken away "everything good"
Thanks to my son, Shane, and his beautiful wife, Cathy for this all expense paid trip they treated me to.

It was cool, because all the "tops" in my wardrobe were from the "Bob Mackie" collection and his fashion show was the entertainment the night before we were to head back home.

The title to this blog post may seem a bit strange...and you may be asking yourself, "how can that be"?
Knowing that my MRI had shown 5 lesions in my brain, was certainly disturbing. However, cancer runs rampant in my family. So being given a MS diagnosis was to say the least good news, considering what it could have been.

Just being diagnosed "with something" was a blessing after experiencing many puzzling symptoms over the years that were beginning to affect my quality of life.When my neurologist (Dr. Marcus Rice who specializes in MS) confirmed it was MS I had to restrain myself from running up and hugging him around his neck. I did however leave his office that day with a big smile when I walked back into the waiting room. I guess my sister Sue and my now deceased (and very much missed) sister-in-law Susie thought I was a bit nuts.

We went to the Dixieland for lunch here in Deep Creek to celebrate.

I still have Dr. Rice as my neurologist-he's the best! He has offices in Norfolk if someone you know is looking for a neuro because of symptoms they don't understand. Have them check him out. Neuro diseases mimmic each other, so a confirmed diagnosis must be determined so you can receive the correct reatment.
God bless.

It's Time to Sell the Car...

2011-02-09T10:50:00.002-05:00

Living with Multiple Sclerosis ( MS) brings many changes as the disease progresses. There is a defining moment when you know that you know a decision must be made. That moment happened to me in June of this year. My husband, Ray and I moved from our home in NC (Sanray Acres) after 26 yrs.to Chesapeake. Gotta say, the defining moment didn't make me one bit happy. (Let me explain). Although I was excited about coming back home and would be living just a few houses from my sister, Sue, in Brentwood, something occured that brought a big change to my everyday life

Well, the plan was for me to come up to spend the night at Sue's house so I wouldn't need to get so early on moving day. My MS can really tire me out. (And usually does).

The trouble all started as I cautiously drove into Sue's drive way. I was driving quite slowly, as my vision on eash side was decling and I couldn't tell exactly how close I was to things.
Well,Lordy be I knew I was close enough when I drove right on up and hit Sues' house! Getting out and seeing that neither Sue nor Joe had seen what I did, I got back in my car and backed it up very quickly. Fortunately, I hadn't hit the house hard enough to do any damage.

My first thought was "I'm not telling anyone about this". Sitting in Sue's den I realized that I had to come clean and tell her what I had done~~The reality was simple...I had to give up my driving priviledges. I knew I had to "turn in my drivers license"...was it a difficult decision-of course-but I knew the time had come and it was the right thing to do.

If I caused an accident and injured someone I would regret it for the rest of my life.

So I discussed this with Ray, and we decided to go ahead an sell my beautiful little car. If we left it in the drive way, I could possibly think "oh well, I'll just drive to the store". I knew that was not an option.

I thought, "well, here we go again, one more thing I had to give up because of this illness". But it had to be done. And as I mentioned before, It was the right thing to do.

So, we sold my car...Good-bye pretty little silver Nissan Maxima. And so, to the person driving my car, I wish you many happy travels.

God bless...

Living with MS? Me too....Let's Talk-Our "New Normal"

2011-02-08T14:59:00.002-05:00

I am sure, like me your lifestyle has changed by leaps and bounds! In the days before living with MS we were actively involved in most things that defined family, work, and hobbies. Now, our "New Normal"
is defined by how our day begins and which symptoms are forcing themselves on us. Each day is different,
depending on which part of our brain is interfering with getting the signals to where they are "supposed" to be sent!

Each one of us is dealing with own unique issues,and MS affects each of us differently. (This makes it difficult for others to understand why one person may be resigned to a wheel chair, and others do well with just a cane or walker). It can be a bit frustrating (to say the least) wanting and even planning to do a certain thing, then low and behold-our body just doesn't cooperate! I'm sure I can't tell you how many times I have had to call someone at the last minute and explain why I can't do or go where I said I would go. Fortunately for me, after 20 some years my family and friends understand this about me by now. We have each been "robbed" of so many -even simple-pleasures we had in our "old normal".

But, like me, I know we want to develop our New Normal into the best quality of life we can muster. It's difficult to learn how to make so darn many changes, but we rise to the occasion with determined effort. I can no longer drive. I hate not being able to jump into my car and visit friends, family and simply go for a day of shopping etc. But, then again, I know it's best that I'm not out by myself anyway.

Yep, acceptance can be difficult, but we adjust, and discover those things that we can do as we live with this "new normal". Of course, my husband Ray, jokingly insists that I have never been normal!...that's his opinion, and you know what they say about those. ha.

I invite you to click on -comment- at the bottom of this post to offer comments/thoughts concerning this post.
For those who do not have MS but have friends who do, please be a support system to them. They need and treasure your patience and understanding. God bless. Til next time.