As MS Progresses, Relationships Change

As the years go by, my MS has progressed to the Primary Progressive Type which only about 15% of us have. This means we have mobility issues that never stops progressing. In this article I want to share how my relationships have changed due to my illness. I have a family who I treasure and I know I am loved by all of them. But, being able to enjoy even the simplest of things with all of them has changed drastically. The last time my sister attempted to get me into her SUV to go somewhere, turned out too funny~so glad I had slacks on!! I tried lifting myself in with my good leg and she attempted to help lift me up and help me get my other (weak side) up. Well, she ended up with her hand finally going over catching me in the crotch and we both just started laughing and looking around to be sure no one was riding by and saw us. Needless to say, I haven't gone anywhere with her since. That was about a year and a half ago!!!

She lives just down the road but I can no longer ride my power chair down to visit~for one thing, I can't get up the steps from the den if I needed to go to the bathroom and then also,when I ride back home I can no longer get up my front steps by myself. So much for visiting.

I have an older brother who I have adored since we were kids. He rides by my house to go to my sisters but doesn't stop in to say hello. I've been told it's because it "hurts him to see me with my MS". Well, I'm still the same me~just a whole lot slower. It would mean the world to me if he would call as he was coming back by and ask if I felt like him stopping in a few minutes! I do understand, because he is such a tender hearted and loving man, but I miss him. I think it's difficult for him to want to believe that I have MS. This isn't really unusual for loved ones to feel this way.

Most all my family & friends know there are days I must lay down a while because I'm too tired to do anything. So, making plans and inviting others in advance is no longer an option. I have missed so many family functions I always enjoyed before~I miss my family.  But, my life as I knew it has changed. So, I want to offer some suggestions for those that have family or friends with an illness that mostly requires them to be house bound. I know I'm not "left out" on purpose, it's just the way it has to be.

If a couple of you, whether family or friends plan to go out to enjoy lunch together and have a good time being together, why not just once in a while, just call the home bound person and say" We (whoever) want to go out to lunch, do you feel like us picking up lunch and bringing it over for a visit for a little while"? Even if the person just isn't up to and has to decline the idea, you have no idea just how much it would mean to them to know you were thinking of them.

If you are a friend and aren't busy one day, pick up the phone and call the home bound person and ask if they feel like having you stop by for a while.

I know I used some examples of my family, but in no way do they ever "just leave me out", they have just learned how and what I can accomplish-or not-

I encourage all of you whether a person has MS or any other debilitating illness to please just pick up the phone and say hello and inquire how they are feeling or what they have been up to. Be a blessing to others. There are so many lonely people sitting at home waiting to hear from you.

Social media is such a blessing as the friends some make on the web are the only people they talk to who take time to have a conversation and share support, love, laughs; and these friendships are indeed real. There are certain people who become true friends and look forward to sharing their thought daily. I receive cards and different little packs of tea because we know what each other's likes are. I have an article here on my blog with a photo of a lovely crocheted Angel a friend sent me for my Christmas tree. You know after a while who you can trust to share your address with.

I must add that as for my sister who lives down the road, she always surprises me from time to time with a complete cooked dinner for Ray & me and the other evening she walked down to bring me an Easter egg  (chocolate with coconut) because she knows I would love it. Now that's real sister love...She called a couple of days ago to tell me she had gone to the grocery already to be sure she could find some corned beef so she can make corned beef and cabbage for St Patrick's day, and of course, she's making enough for us. Sure is great to be loved! 

So until next time, may God bless you and your loved ones abundantly as he has mine.

One Victory at a Time


Recently, I had my first really bad cold for many years and wow did I learn just exactly how "not so weak" I was before my body had to try and fight off the cold and feel as well as I did before. For the last several years as I have lost many abilities  because of what my MS had literally "stolen" from me, I had concentrated on ways to be able to outwit some of those symptoms. My right side has become extremely weak over the years. First aid I had to rely on was a cane, but, actually I view that as my first victory in gaining some of my freedom. I could still walk and get where I wanted to go.

Then next, my weak ankle started turning out, so I had to be fitted with a brace for that leg. So much for wearing pretty shoes!!! But to me, that was my next victory~by golly, I could still get around. The next loss was having my right hand not work properly, so doing my hair & make-up became a real challenge~it still is to some extent~So much for the "gotta look perfect" kinda girl I was before. So now I have a friend come in and do my hair, and use a 10x mirror to apply my make-up. Not perfect, but it'll do! Hooray, another victory.

I had had to give up driving when I "bumped" my car on the front of my sister's
house. That was a real bummer, but thanks to family & friends I still get to wherever I need to go. Well, mostly to my hubby Ray who has taken on the role as my caregiver. So I still consider that a victory with much thanks to him.

Now I need to use my brace all the time, plus my walker, even here in the house. But, I still get from room to room. MS still hasn't taken away my will to live a great quality of life and to me that is my biggest victory of all. God has shown me everyday and how it goes depends on my effort and determination.

Now to tie in where I first started with having a really bad cold. I suppose my body trying to deal with my MS and a cold was just too much for my immune system to handle. The weak side of my body shut totally down for about 1 week during the worst part of my illness. I had no strength to sit up or even roll over in bed. I could not go to the bathroom or any other room for that matter. All my mobile devices helped none what so ever. My wonderful Ray took total care of me 24/7 and had to take care of my needs as well, and I must say that even after 35 yrs. together some of those things were so embarrasing to me.



VICTORY
 

As I slowly began to get my strength back in my weak side, I realized that living with limitations is much better that not having a side that is totally useless. I learned such a real lesson as I went through the "having a really bad cold" and I count it a victory everytime I can get up and use my mobility aids to get around my home, to have my hand back to where I can sit here and type on my blog, and talk to my many family and friends on facebook.

YES INDEED I DON'T COUNT MY LOSSES ~ I PREFER TO COUNT MY VICTORIES. I AM SO RICHLY BLESSED.
 Until next time, may God bless you and your loved ones as he has blessed me and mine.





Multiple Sclerosis Natural Treatment ~ Multiple Sclerosis treatment

Multiple Sclerosis Natural Treatment ~ Multiple Sclerosis treatment

Living with MS has Changed me into a JS~

Over the last few months I have noticed that without a doubt, I am really beginning to notice a major progression in my Multiple Sclerosis. I can no longer lift my weak leg high enough to get into the bathtub, and I am very much slower in moving around even when using my brace and walker.

After so many years with Primary Progressive MS in which your symptoms never go into remisssion, they just steadily increase over the years; I have learned to tell when something that is causing decline is occuring. This time, it began with a couple of weeks with my weak leg trembling constantly, and I could tell it was also getting much weaker. The permanent damage was done within two weeks. MS is relentless, and has now robbed me of more mobility!! I accept this because it is what it is.  So, even though this causes me to be sad, I will deal with it as best as possible and will still do the things I can, just a bit slower than before!

If there is one thing over the last few years I have learned it is I focus on having a mind set of  "why me" or I can have a mind set of earnestly and determinedly find JOY in even the smallest of things. My precious 2 1/2 yr. old grand daughters visit and there is no way I can "play" with them, but my heart is filled with joy as they play with Papa (Ray) and laugh and giggle. They now are old enough they will sit on the couch and we read together. I love this, because WE giggle as I read and act silly while I'm reading. JOY~you betcha!

I find JOY in the fact that when all my children and grand children visit, they are all so close and enjoy each others company so much. They enjoy telling stories about years gone by and the things we all did when I was well, and they laugh at lots of things I did! I ENJOY every minute of it! Am I a blessed lady~you know darn well I am...I'm not sure why God loves me so much, but one thing is for certain~I know that he does.

I have a very handsome precious son who is 42 yrs. old who has autism and other issues as the cord was wrapped around his neck during delivery causing brain damage. He has ALWAYS been in the best facility during his growing yrs. and now lives in assited living and has always had the best of care. I talk with him  and tell by the sound of his voice he is well. It brings me JOY to know he will always be well cared for.

And as for the simplist of things, I went in the kitchen and put on a pot of butter beans~only those with my level of MS can understand why that made me feel so joyful. There are many days when I woudn't have the energy to do that! But one of the biggest JOYS in my life is my husband of 35 yrs. Ray~he does everything here at home that ever needs to be done and has become an awesome chef.  He treats me as if I'm a china doll that may break. He's my big Harley guy, who has NEVER complained about anything. My illness affects him and I know he hurts when he sees me struggle to do the simplist things. But, somehow, he always finds ways to make me laugh and add JOY to my day.

So yes, I do not focus on all the many things I can no longer do, I seek JOY in all things. I give God my thanks for making me this way. For me being a "JOY SEEKER" is just part of who I am.

Until next time. I hope ya'll will become a Joy Seeker, it makes this darn MS so much more manageable and helps lower stress. May God bless you and your family. On the days that my cervical and lumbar stenosis causes such unbearbable pain, I try to find even more ways to be joyful, by reading or other things that take my mind off my pain. I know so many of you experience tremendous types of pain daily, please know you are in my prayers always. LOVE & BLESSINGS ...

My Christmas Wish~The Power of Hope

At this joyous time of year we celebrate the birth of the Christ Child. One of the precious gifts he brings us is the "Power to Hope".

Hope can be defined as: to cherish a desire with anticipation. Also, to "expect"something to happen or be true.
 

It is my Christmas Wish that after many years and millions of dollars a cure for Multiple Sclerosis will be discovered.



Invisible Symptoms in MS Part 1 - National MS Society

Are Facebook Friends Real~You Decide

Recently I saw a comic strip that really got me to thinking about Facebook Friends.  There were about 4 people standing at the back of an empty room at a funeral~with nothing at all but the casket and a couple of flower arrangements and many empty chairs. The caption read: "She had more than 2000 friends on Facebook, I thought there would be lots more people here." I am one of those "still alive and happy" people who have over 2000 friends on Facebook. I am blessed to have each and everyone of them~Will any of them be attending my funeral when God calls me home? I think the answer to that is an emphatic NO~but, you see, THEY are here for me NOW~and that is what makes them REAL friends~I have seen where a few folks refer to their friends as "virtual" friends. However~Webster dictionary states that "virtual" friends~"are existing or resulting in essence of effect though not actual fact, form or name." So my over 2000 friends are the "real deal" and not just figments of my imagination.  
     The photo above is a note and a lovely crocheted angel that was sent to me recently by my facebook friend, Valerie Mantz who lives in Washington state~will I ever meet her face to face~no~probably not~but, I was so honored that we have developed such a warm friendship and she cared enough about me to take the time to send me a note & a gift straight from her heart to mine.~I have come to "know" her very well, and feel we will remain friends for many years to come~
     In our news feeds we enjoy seeing photos of our friends, their families, pets (who are certainly their family!!) shared jokes, or inspirational graphics. Or sometimes, we post photos just because we think they are beautiful and want to share them with our friends. We share our childrens news and accomplishments, and so many other things that life brings our way. I look forward to reading all of these when I log in each day.
     Then~there is another way we talk, share, inspire and show love and real hugs for each other. I am talking about our "GROUPS"...I, as many of you, belong to quite a few groups that share your same interest~Prayer groups, MS groups and others~And let me just pause and say_some groups are OPEN which means anyone can join and read what is shared in the group. Then there are SECRET or CLOSED GROUPS~in these groups we have a shared "honor code": WHAT IS SHARED IN GROUP~STAYS IN GROUP~we visit our groups usually daily if time permits, and this is where we meet some of the most amazing people who become trusted friends that we share our deepest concerns about our illness, different treatments, updated information on treatments, and how it affects each of us in our daily lives. We share really personal information and help each other with words of encouragement, love and genuine care.
     I have to say that in the groups, I have formed many very close friendships with people all over the world. I have learned about many different cultures, and enjoy these far away friends as if they were sitting around my kitchen table. And all my friends here in the states seem as close as if we were sitting and having a cup of coffee together each day. I have found that when we can't get out and about and enjoy the social life that we once were able to, (before our mobility issues progress) having these friends here are such a blessing to me~I enjoy seeing their smiling faces, we laugh together, sometimes even cry together. To those who say~"you can't possibly talk to 2000 people a day"~I say of course you can. When we go in group, we "collectively" talk to many many people everyday~And hopefully, bring joy, laughter, hope, and the determination to keep on keeping on to so many wonderful friends all over the world.
     So as I am typing this article to post today, I am thanking God for modern technology~without all my family and friends here on Facebook, there would be many days of being a tad lonely, and wishing I had someone to talk to! I enjoy having "alone time" and never really feel alone~ Ray is usually around to keep me laughing about something~he is such a cut-up!! And then there's times, I just sit and have a good talk with God~I know he always listens and never has "selective hearing loss" like someone who shall remain nameless!!!! haha. Just kidding ya'll  
     Thanks so much Val for allowing me to share your sweet note and the angel that will definitely have a good place on our Christmas tree this year.
     So until next time, to all my friends I'm sending love and {{hugs}}. May God bless each of you and your families as you travel this road we call "life".

Multiple Sclerosis and "Strategy"~Which Approach Do You Take?

Take a good look at this "bridge"...Whoever designed it must have a great sense of humor or didn't really expect anyone to cross it!  When I came across this photo I immediately thought of all of us who live with MS daily. The correlation as I see it, is as our MS progresses just living life offers challenges that can seem as difficult as if we have to figure out how the heck to cross that bridge.

Just as we all experience different symptoms and degrees of lack of mobility we decide exactly what strategy we will use to deal with this menacing thing we call MS.

Strategy is defined as a management theory to design a plan of action to acheive a specific goal~in our case~a strategy that will enable us to live the best "quality of life" we can muster. Or simply, to have our own unique approach to handling our every day life.

Everyone's strategy will draw on their mind set of how they view their MS. Some prefer to think of themselves as warriors or fighters who go to war everyday. This is a valid approach. They see themselves as being "in battle" against a Monster which will determine their "war strategy". I do admire that approach and those who prefer to use this strategy. They are determined to not let MS take over their lives and will get up each day ready to whip the Monster.

Then others strategy will be to manage the mobility issues in a totally different approach. I seem to be in this mind set of how I view my MS. My perspective is that I do not see MS as a Monster, but rather an illness that I have to have a strategy to manage. This in no way means I see it as giving in or giving up. But my specific goal is to live my life as well as possible by adapting to this illness. However, I don't want to see myself as having to get up each new day and having to go into battle. That probably would stress me before I even get out of bed.

So my strategy is to come up with a plan to acheive that specific goal, to have the best quality of life daily. After 25 yrs. I have learned to really listen to what my body is saying to me.  I do stretches daily to stay as limber as possible. My body appreciates this. So the blueprint in my mind set is to rest when I need to rest, pay attention to every step I take, even when using my walker, and make drs. appointments in the afternoons, so I don't need to rush in the morning. Also, on days I feel a simblance of energy, I do a few things around the house, and like all of us, I overdue and have to pay for it the following day. If a friend or my family are coming over on a specific day, I get plenty of rest the day before and pray I get up feeling well enough to enjoy their visit. I also use many strategies I learned while taking physical therapy a few years ago.

I realize there are those who have small children that they must care for, and responsibilites without much help from anyone. To you I say, God bless you as you live each day the very best you can.

None of us have all the answers because we are all different, but whatever strategy you take to maintain your MS, I pray that your approach is working for you, and that none of us have to ever get to the other side of that bridge. I think I'll take a canoe~we'll outsmart that wise butt who designed it!!! After all, we are a determined lot! And by the way, I'll supply canoes for all of you too. They will be waiting for you lined up on the bank of the river!! haha.

Until next time, I want ya'll to know I care about you and pray for all of you collectively daily. May God bless you and just keep on keeping on...

Living with MS is a Daily Balancing Act-Part 1

If there is one thing I've learned over the last 25 yrs., it is that having MS is truly a balancing act. Not just in the real sense of standing or walking, but also of balancing my activities according to the symptoms that are affecting me on any given day.

Like the whole world, I was totally amazed while watching the gentleman walk a tightrope across Niagara Falls recently. What an awesome feeling he must have been experiencing.  Darn I feel awesome when I can walk to the bathroom on my own with no cane. Hardly a comparison-right! If you agree, well in my opinion you are wrong and have no understanding of MS.

Over the years as my MS has progressed to Primary Progressive, I discover a feeling of victory anytime I accomplish the smallest of feats. I think I'm entitled to feeling that sense of success. Anyone who has MS or a loved one with MS understands exactly what I'm saying.

Multiple Sclerosis robs each of us of so many of the activities we once loved and enjoyed-then, it just keeps on "taking" away what we can get done. It's an on-going process as we need a cane, then later a walker, perhaps a brace on the really weak leg or perhaps both legs. As I was just starting to really need a cane several years ago, my husband called our scatter rugs -"speed bumps"-and always reminded me to be careful not to trip. Such a caring fella he is~

As time passes and we realize we need more assisting devices it's only natural to feel an overwhelming sadness. Grieving for what we are constantly giving up (not in the sense of giving up~ but what is necessary) needs to be done in order for us to move forward and learn to see these as mobile devices that will help keep us moving.

I remember when my sister and I had gone to visit our cousin, we stopped on the way back home to pick up a few things at the drug store. I got my walker out and as we started inside I asked her "will you be embassased with me using my walker"? But, as we were entering the store I realized for the first time that it was ME who was embarrased. So, yes, we do accept that we NEED these in order to stay active...So, once I admitted to myself how I was looking at it all wrong, I became comfortable using my walker in public. To some, this may seem trivial, to me it's a real breakthrough.

Part 2 will concentrate on lack of energy issues and how it affects how we plan our day and schedule to do something or go somewhere only to have to totally change our schedule according to pain, weakness, and just plain out being too tired to participate.

So to my friends who have MS, I wish you tightroping success today and to those who love someone with MS, please help them stay on balance as they attempt to walk that thin line between walking or falling.

Until next time: I love each of you and may God bring you and your many loved ones many blessing.

MS treatment reduces relapses, but can’t slow progression: study | CTVNews

MS treatment reduces relapses, but can’t slow progression: study | CTVNews

I Allow Myself "Melancholy Moments"

Over the last few years as my Multiple Sclerosis has progressed I have found the need to allow myself to delve into some melancholy moments. I am by nature a happy spirited person, but with each mental or physical loss, a time of sadness sneaks up on me. I have learned to let myself have a period compared to grief as I lose more mobility and require much more assistance in getting around. I no longer even attempt to do anything without first putting on my brace to keep myself from turning my ankle out so far it will snap. At my age, these old bones would never heal as they might in years past. More importantly, I take no chances at all that would cause me to take a tumble and land on my butt.

Some days I have too much inflammation in my brain, and I have a difficult time in thinking, finding words I know, but just can't find them. They are in my brain somewhere, but I have no idea what quadrant they may have drifted off to!

I have been blessed in that-my progression has been steady for many years. What? you may ask! but, it has allowed me time to adapt and discover ways of performing tasks in safe ways. My husband is my caregiver as my readers know, and he has been the house cleaner, laundry man, and chef as I can no longer accomplish any of these things. If this bothers him, he never lets it show. He is an amazing man, and I am so blessed to be loved by him.

So, yes, I get melancholy when it seems every event, that requires me to get out of my comfy caftans and put on my nice clothes to attend-totally has to be orchestrated. I totally rest the day prior-then that day-I have my shower and most of the time need to rest for awhile before I can manage to get ready. Just so many things that require so much energy and quite often by the time I leave the house I am already worn out!

When the sadness sneaks up on me, I indulge it for a while and realize how much I can no longer do, and what MS has stolen from me. BUT-then I know that how my day will go is totally up to me and my state of mind. I bow my head and thank God that I woke up and got up this morning and ask for the strength to get through my day and in some way be a blessing to someone, anyone-that is one of the things that brings me joy. So thanks to God I send that melancholy packing and not let it hang out with me too long...I do think it is important to acknowledge to ourselves what we have lost, but I believe it is much more important to realize what we still have.  Until next time-may God bless you and your loved ones.

Happy Father's Day to my Caregiver

As Father's Day approaches, I want to take the opportunity to wish my caretaker a wonderful and special Father's Day. You may be wondering who the heck is that hunky guy in the photo-well, he's my caretaker. He also just happens to be the love of my life. This is Ray when we met in 1978. At the time we met, I was an energetic, independent mother, working and taking care of my children. This is not going to be story about "us", but more a story of what an outstanding man he is, and how he has loved "our" children and how he stepped right into the roll of what a father is and should be. Thinking back I smile to myself, as my youngest son Shane wouldn't even look at him for quite the longest time. He was three years old and I suppose he didn't like someone new taking up any of his mommy's time. But, of course, that all changed and Ray adopted him when he was in the first grade. Shane was happy about that-but-the first day of school with his new last name-he came home and complained that he was placed almost at the end of the last lunch line. His last initial changed from an A to an S.  

My daughter was about 12 yrs. old and my other son was 9yrs. old. They gave him a rather cold shoulder for the first couple of months or so, but Ray was determined to develop a lasting and loving relationship with them. Well, needless to say, over the last 34 years, Ray and "our" children are so very close. Even as teen-agers they would discuss things with him instead of me. He taught them that a man can be strong and still have a heart that is filled with love and hugs for them always. He demanded respect by earning it and he respected them and their challenges as they were growing and and maturing into becomeing fine young adults.

He always told them, I will stand up for you in any situation as long as I know you're always telling me the truth no matter what. He taught them many life lessons and I could never find a better man to step up and be such an outstanding father if I had traveled the world over.

Now, the children are grown and have families of their own, and are the fine young adults, and parents that they are mainly because Ray "showed" by example, how to be a parent who teaches right from wrong, but doing it all in love.

And for the last few years Ray has stepped up to be the most loving "caretaker" to me. Something, I never in a million years thought I would ever need. Life sure turns some corners sometimes. He brings me joy everyday with his awesome sense of humor and always lets me know that even though I can no longer go fishing out in the bay, or riding four wheelers, and can't jump on the back of his Harley and ride the wind with him, I am still the woman he loves and having MultipleSclerosis can never change that.

So, to this awesome Father I want to say-I thank God everyday for bringing you into my life when I didn't even know I needed you or the love and devotion you would bring to our lives. You fill my heart.

Happy Father's Day Ray...

Why am I so Darn Tired?

At first look this graphic looks rather cute...BUT:

To those of us with Multiple Sclerosis it isn't as funny as you may think. Some mornings after a really good night's sleep I get up, start my day, thinking "oh this is going to be a really good day to get a few things done". More often than not, after coffee and breakfast, I'll get my shower and in just that short time and activity, I feel as though I just ran a 5 mile marathon. This is not unusual for those of us with MS. Quite often, especially for the newly diagnosed, it is difficult to explain to our loved one's how an activity such as a shower can completely rob us of so much energy.

To help others understand our situation we need to know the many different types of fatigue we can experience with MS. We must do our own research and confer with our doctors so we can then help others understand that it has nothing to do with not pushing hard enough, being lazy, or making excuses for not doing a particular thing...
Our quality of life is much better when we educate our loved ones about our illness and strengthens our relationships as we bring them on the journey of adapting to new ways of doing old things.

There's several culprits that cause the different "types" of fatigue we deal with. We can have a different "type" of fatigue on any given day.

The most misunderstood type, I think, is LASSITUDE. Lassitude is an overwhelming tiredness not related at all to any physical activity. It is caused by the dymyelation in our Central Nervous System (CNS). This seems so puzzling to others. How many times have we heard "but you look fine"?

HEAT SENSITIVITY causes our CNS to short circuit because it has no tolerance to heat. The proper instructions can not travel to the necessary locations to tell our legs to move, etc.

SHORT CIRCUITING also causes localized fatigue. nerves in individualized muscle groups tire with use. For instance, after walking, our legs can just decide-ok-I'm tired now. Or writing or typing can become very tired after just a few minutes of activity.

SLEEP DISTURBANCE'S  due to leg spasms, depression and a host of other factors will leave us totally worn out before even getting out of bed.

I know each of us have had to give up so many of the things we enjoy doing, or not socialize as much with our friends, but I have personally found it to be so much better when my loved ones and friends know the WHY of me not doing some of those things.

I'm not talking about sitting down with them and holding a "this is what is wrong with me class"-just explain a bit at a time...and they will eventually understand basically what is going on. Of course this is just about the "fatigue" factor- BUT-one thing at a time-Fatigue is the #1 issue with MS -so just start there.

Until next time, do the best you can each day and take pride in how much or how little you accomplish...HUGS  and love to ya'll God bless...

Helping Loved One's Understand MS.

     23 years ago when I was diagnosed with Multiple Sclerosis, I started researching what was in store for me and my health in years to come.

Fortunately, I had a neurologist who specialized in MS and he took all the time I needed as he explained the progressive illness to me. He answered all my questions, and as the years went by, he was so patient in helping me to understand new symptoms I was experiencing and what was occurring in my brain. For example, when I lost my sight once for a few hours, then when I saw neon colored zig zags bouncing around the walls-he said both episodes occurred as inflammation was in that section of the brain and was affecting the myelin. I have opted not to use predisone because he explained that the inflammation would improve on it's own, which it always did. He suggested Avonex injections and so I started that, and my husband gave me my injections. I found the side effects to be absolutely miserable.

I showed my husband the graphics I could find that helped him understand what was going on in my brain. In the MS groups I participate in on Facebook, I quite often find it heartbreaking to see the people who are told by their loved ones "they are lazy", well, you can't be too sick, you look fine" and I am amazed how many relationships are completely destroyed because the other partner just doesn't believe that the illness is as bad as what they are told, or they simply can't accept the many daily challenges it presents.

When a person has a chronic illness like MS that has so many symptoms that can't be seen-such as the debilitating fatigue, cognitive issues and a laundry list of other challenges, some people just never understand why the partner can no longer clean the house, cook the meals, and all the other "things"  that have to be done. This is the time when one will discover how much love and devotion a partner possesses. Some partners just can not or will not, adapt to all the changes. Unfortunately, the MS partner has to then deal with losing a loved one because of the illness. The Stress this presents will make the person with MS become embittered or determined  to take complete control of their life. It truly is a struggle and others with MS are the ones who understand the loss.  That is why I am so thankful for the MS groups on FB. It's a safe place to share and inspire and uplift each other. I am so blessed to have made so many wonderful friends through this venue. I have friends all around the world. We also learn about other cultures and what different MS research is happening in other countries.

Ms is a thief-it robs us of many things we love. We must literally redefine ourselves and adapt to a new way of doing old things. Some old things can never be a part of our current life as we continue on our journey.

There are many other friends we meet in the MS groups on Facebook who have a wonderful network of family and friends that love and respect them enough to step in and carry some of the load to help us live the best life possible. I am so happy to say, I am one of the blessed ones.

My husband has been here to pick me up when I fall, and do the things around the house that I can no longer do. He is the love of my life and never hesitated to step into a caregiver roll. I have explained MS to him as my illness has progressed.  I share articles with him when my MS Focus, and other magazines arrive.

I just want to add that after using Avonex for quite sometime, I was later put on Copaxone. Neither slowed down my progression and it was a personal decision to stop using the drugs as I was later diagnosed with PPMS. My neuro agreed with me. So, for the last few years I have taken no MS medications and believe me, I sure don't miss all the side effects.

Until next time, may God bless you and your loved ones.

Life Coach-Catherine Ferrier Smith

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

        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


Timing Energy Levels
throughout the day



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...

Symptoms of Autoimmune Diseases: What to Watch For -

Symptoms of Autoimmune Diseases: What to Watch For -

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

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

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'

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