Sometimes my thoughts are my worst enemy

Oh my goodness, I think this is the longest I have ever gone without writing an entry and I must say I feel terrible about it.  My mind has been in a million places but I haven't been able to make it stop in one place long enough to form many coherent thoughts so I am going to attempt to make some sense tonight.

After a couple weeks  with the new TENS system, I am still unsure if it is helping as much as I had hoped but am using it as much as possible.  It never ceases to amaze me at how much power this thing uses!  Two batteries rarely last more than a couple hours, so it's a good thing I have been doing a pretty decent job of charging them up ahead of time so I haven't been left without batteries too often.  Still, it's somewhat inconvenient to need to change them as often as I've had to but as long as I get some relief, I'll continue to do so.

I guess you could say my life has fallen into a sort of lull as of late and there isn't much to write about as I truly do not find it productive nor helpful to merely write about the pain I feel nor complain about it.  There HAS to be more to life than this.  There is more, isn't there?  Or have I lost touch with life outside these four walls to such an extent, that I've forgotten what it's like to feel more alive than I have been?  This could very well be the case as I cannot even remember the last time I left my home with the sole purpose of having fun.  What is fun anymore?  For me, I couldn't even say.  Honestly, if someone were to ask me what I wanted to do for an entire day, I would be speechless.  Yes, ME, speechless!  My mind would not even know where to go to come up with any ideas, much less decide where to go or what to do.

I spent much of this past weekend and early this week crying and over analyzing things that have been happening in my life and I need to learn to stop doing this.  I freely admit to having this terrible fault in my character and need to work on it, yet it such a part of who I am!  How do I stop doing something, which truly makes me insane, yet calms me at the same time?  I can't explain why over thinking situations would relax me when in all reality, it keeps me up at night and prevents me from sleeping enough, yet I can't seem to stop.  And then I want to demand answers to my questions now!  Not later, but immediately, even though the timing is, more than likely, very premature.  Ugh, I can't even explain what I'm talking about but I think I have reached a place where I can finally stop stressing as I believe some of it has been resolved.. to a point.  Add my scattered MS-brain to the mix and you get one very messed up lady on your hands these last few days!

Not the best few days for me and those I love

It seems Thursday was basically a bad day all around for me and most of my friends.. and my sweetheart.  When I first got on my computer and checked Facebook, I was startled and really very frightened, by what I read.  My honey had experienced a sort of "black out," or perhaps seizure, of some kind.  It was short lived as it was only a couple minutes in duration, but it was enough to scare his co-worker into calling the paramedics.  This has us both concerned and I hope he doesn't have another episode before seeing his neurologist in a few weeks.. or ever!

This is a message he wrote and posted  on Facebook on June 28th.. and I love it.

A few of my dearest friends with MS were also having a terrible time of it and much of it can be attributed to the intense heat wave which has been plaguing almost the entire United States for over a week.  We should finally have some relief by Sunday, or at lease in parts of the Midwest.


Then there's me.  I had gotten up earlier than usual Thursday, as I'm trying to become accustomed to a more "normal" schedule so I can catch my sweetie earlier in the day and maybe even get a few things done.  After reading his message and knowing he way laying down to sleep for a  while, I took advantage of the moment and showered and this pretty much wipes me out for the rest of the day.  I knew I had to relax after showering as I still had a few things to do as the day went on, so I hooked myself up to my TENS system and sat down to let it work its magic.  I really am going to blame the excessive heat for the incredible pain I have been in as neither the Baclofen (my pain/spasm medication) nor the TENS has been helping as much as usual lately.  By the time my sweetie got online, around 3:45pm, we only had a few minutes to chat before I needed to get ready for my parents to take me to my chiropractor.  He was still feeling quite "out of it" and reassured me he would be going to bed early that evening, as I still needed to do my grocery shopping after my appointment and would not be able to catch him again that night.

Even with my using a motorized cart at Walmart for shopping and my parents loading everything into a regular cart for me, by the time we arrived at my home I was completely exhausted and my hips were in terrible pain.  What had I done to hurt so damn much?  Basically, nothing. I'm sure I had been very tense inside since I couldn't get the picture of him out of my mind, laying on the hard, cold floor yet having no recollection of it when he came to.  I couldn't get this image out of my mind so between my concern for him and the body pain I was in, it was a very shitty day and evening.


Honestly, the pain keeps lingering and with the weather finally stabilizing a little bit this coming week, I'm hoping the pain will lessen at least enough for some relief.  I don't ask for much, just a tiny bit would be nice.  The good thing is that after spending some time with him online today (yes, it was technically yesterday), he was feeling somewhat better and for this, I am VERY thankful.  Now to see what the rest of the weekend and week hold for me, my love and my friends.  It can't get much worse, can it?

Dealing with the heat, life and love ♥

Tomorrow is the 4th of July, Independence Day for the United States of America, and I will spend it at home where it is nice and cool.  We have been having 100°to 110°F (37°to 43°C) for days on end with no relief in sight until, maybe, Sunday or Monday.  Luckily, I haven't had to leave my house for any reason, aside from seeing my chiropractor yesterday, so I've been keeping very cool but those of us with chronic illnesses still feel the effects of weather changes, even when inside our homes.

My happy news is that when I was coming home from dinner with my parents (after the chiro) yesterday evening, there was a box in my mail with a battery charger and two packages containing four rechargeable batteries in each!  I was so glad and hopeful that I would maybe finally get some relief with my new electrotherapy system and so far, it is working quite well and the charger is actually working as it should.  Yay for me!

I have to admit that as much of a positive person as I have become in recent years, I have few friends in my life.  Wait, what am I saying?  I HAD very few friends until recently!  Now, I have friends to chat with at almost any time of the day and it is absolutely wonderful to know they are there for me as much as I am there for them.  Most of us share an MS diagnosis, but not all.  Those who do can understand me on a different level as we have many of the same insecurities, battles, fears and are able to support one another beautifully.  And in the process, I fell in love and am on top of the world.  What more could I want?

Simply by being true to myself and sharing my insights, an entire world of friends have come into my life and changed my outlook to make it even sunnier than it already was, and this is saying quite a lot.  Yes, I get down on myself and life when my MS is kicking my behind with the pain, but all in all I really am a very positive person as worrying and stressing is pretty damn pointless.  Now I have a new focus.  I have something, or someone, to keep my mind so very occupied that even the pain cannot compare to what I feel in my heart and mind.  I hate to call him a distraction but from the pain, yes, he definitely is that and I am very grateful.  It feels amazing to be happy and smiling from ear to ear for no reason other than knowing he's thinking of me.

The difference one evening can make.....

Life never ceases to amaze me.  When we are not expecting anything to happen but greatly wish it would, life can bring about brilliant events.  Saturday night was one of the most wonderful evenings I've had in.. I can't even remember how long, and all because of one person.  Or I should say, one man.  And now, suddenly life is brighter and pain doesn't seem nearly as bad as it did before.

I'm not going to go into any details about anything as it's too early on to say much except that my heart is floating on Cloud Nine and I don't want it to come down any time soon.  I also don't wish to make any illusions for myself but sometimes, it's difficult not to do just that.  But for now, I'm going to enjoy this wonderful man who has come into my life and delight in getting to know him more and more.♥


Today, Monday, will be a busy day for me.  I have a few overlapping appointments which I hope will end up NOT colliding!  Dorraine will be at my home, my local cable company will be here to hook up phone service so I can have the "Lifeline" placed at a later date and the physical therapist will also pay me a visit.  I hope to receive the package with two rechargeable batteries and charger as the ones I have are not working for more than a few hours and I need more relief.  I believe this TENS system is far superior to the one I had initially, but it's hard to tell with it only working for a couple of hours.

I am thankful for many things in my life, namely my new friends.  I have met the most wonderful people on Facebook, have become very close friends with a handful of them and my life is more enriched and full because of them.  To me, they are not simply names and faces on a screen but real people with feelings and emotions and we share who we are and what we feel with one another on a daily basis.  How often do we really do this in person?  There's Barry and Amy and Cheryl and Brett and Brenda and Kristina and Liz and Mike and many more.. and I'm thankful for each and every one of them.  For someone like me, who is not able to leave her house too often, friends such as these have made all the difference in the world and I am forever indebted to them for the happiness and smiles they have brought me.

I just want some pain relief!

My physical therapist came to see me today, along with the senior territory manager of the company I get my TENS unit through.  They brought me a new unit, called an Electrotherapy System (I'm still going to call it a TENS unit or system since it's shorter!) to see if it would help me since the TENS unit I had used stopped doing the trick after two weeks.  When the lady put the new, much larger electrodes on my body, I was thrilled at how much better they adhered to my skin and when she turned the unit on, I liked what I felt.  This system has a very intense setting for the first half hour, yet I didn't think it would be too much for me as I had been dealing with my old TENS unit on the maximum strength for up to 16 hours per day.  After half an hour, I can set it to work as a regular TENS unit for the rest of the day and evening, except this one goes up much higher in its intensity.  Ahh, finally I would get relief!  Or so I thought.


Along with this new system, I was given two sets of rechargeable batteries and charger and was told both sets of batteries were fully charged.  So imagine my surprise when my TENS stopped working less than three hours into using it!  I figured the batteries had not been completely charged so I switched the batteries and proceeded to put the used ones on the charger.  Not even two hours later, the new ones quit on me.  What the hell?  Frustrated, I put a pair of regular AA batteries in the unit and they DIED after less than four hours.  Ohh my goodness!  This system uses so much more power than my last one that there is no way in hell I will be able to use it all day long as I need to do!  I will definitely be calling the territory manager to let her know my utter surprise and disappointment in this system as I need it to work the entire day.  Why can't it have a power cord?  That would be wonderful as I'm sitting next to an outlet most of my waking hours and this would save much time on switching batteries over and over again.  All I can say is I'm frustrated out of my mind and dying for some relief.

I had a very unsettling incident yesterday as Dorraine and I returned to my home with Emmi Sue after her blood sugar veterinarian check.  Dorraine brought her in, so the only thing I was carrying was my purse, but as soon as I walked into my house, my body suddenly became extremely weak.  The weather was a lovely 75°degrees and breezy, so it had nothing to do with excessive heat, but my body suddenly bent forward and my legs had almost no strength.  I walked a few steps to the kitchen counter, where the sink is located, and leaned my backside against it as Dorraine looked at me with the strangest expression.  I must have had the oddest look on my face as I told her I couldn't move.  I was stuck in that position and was honestly very frightened.  I finally managed to ask her to pass me my cane, which I have rarely used inside my home, so I could try to walk over to the computer chair.  I don't even want to know how horrible I looked as I dragged both legs those few feet to my chair.  What would I do if this lasted?  Today was Dorraine's day off and I would be alone all day.  I knew I could call my parents but they worry too much as it is and didn't want to cause them extra distress but they would, eventually, need to know this had happened, which I shared with Mom earlier today.  And yes, I do plan on getting a Lifeline unit for my home as soon as I get a phone line.  The state will actually pay for Lifeline (or MedicAlert, I'm not sure which one) and I will take care of the line itself.

I'm scheduled to see my friendly neighborhood chiropractor tomorrow (ok, technically today!) but I'm sure I will end up cancelling as we are expecting another scorcher.  The temperature was near 100°today and is expected to be even hotter tomorrow and I can't imagine what the heat will do to my body.  I'm afraid of having another reaction as I did just yesterday and it wasn't even because of the heat! Ugh, summer is the worst time of the year for me and I can't wait until fall although winter is damn horrible, too.  There's really no good time of the year where I live, which explains why I rarely leave my home.

A peaceful day full of reflections

This has been a peaceful day and evening for me.  I wish we could all have such lovely days where the phone doesn't ring, our children (human or four-legged) are on their best behavior, body aches are mostly under control and the day goes by without incidence.  It really has been ages since I've had one of these and it was much needed.

When I first saw this posted on Facebook, I thought to myself.. hmmm, this isn't me anymore.  So above the image, I wrote:  "The funny thing about me is that I don't want to be who I used to be before the MS.  I don't remember what that life was like anymore and I really love who I am today.  I would just love to be without the pain or needing to depend on others as much as I do.  Otherwise, I guess you could say that I've made my peace with MS and the life I have."  And as those of you who follow my blog know by now, this is exactly the way I feel.  This doesn't mean I don't miss doing things I did in my youth but to spend too much time looking back with anything but fondness would only cause heartache and not accomplish anything but hours of tears and wanting for something I can never reclaim.  So why bother?  I prefer to remember what I can and smile that I was able to do what I did and relish in those times when I'm sure I made my parents insane with my craziness!  Those are the memories worth hanging on to, not the ones which would make me cry.  I'm sure we all have enough sadness in our lives already and I, for one, do not wish to be more heartbroken than I need be.

When I was told I had MS, I felt it was the end of the world for me but what I hadn't realized was that it was actually the beginning of a new life and a new, exciting way of thinking.  It's true that I didn't allow this change to really take place until I was around the age of 37 or so, but it finally happened when my mind was able to embrace what lay before me.  How did this happen?  It didn't actually hit me until earlier today but I had hit rock bottom, which is when the greatest changes tend to occur in most people.


I had just gone through a terrible break up with my paralyzed ex-boyfriend.  It was so bad, in fact, that I tried to commit suicide as a way of making him stay with me.  I still cannot put my mind around the fact that I had done that, but that was how desperate I was for the mental abuse to continue because it was all I thought I deserved.  After two ex-husbands who had not treated me well and then this man who was not too mentally stable, I was afraid for him to go so I did the unthinkable.  I shot myself up with far too much insulin and followed it with a handful of Valium.  I ended up in the emergency room and then stayed for a couple days in the I.C.U. (intensive care unit) until my body stabilized.  While in the hospital I asked one of the nurses for some paper and wrote a diary entry, as I had kept a diary for around 25 years, and when I finished writing I signed it Lucy.  It was at that moment when the old me was put to rest and a new me began to emerge.  I would never look back after that point.

I am always a work in progress but there is one thing that changed drastically in the last few years.  I really and truly love who I have become and this is something I could never have said before.  When this change took place exactly, I can't even say, but it happened.  Maybe I just got tired of being miserable and finally realized the only one who could change my reality was me.  I'm not even sure but I think maybe that was it, or at least part of it.  Or maybe I wanted to be as wonderful as I felt my three little girls believed I was.  Yeah, there's more truth in that than anything else I could ever say.  I wanted to be more like them!  I embraced more of a carefree attitude (which my younger brother would probably debate!) and realized that not believing in a higher power and announcing this was the right thing for me and in doing this, I freed myself from the prison my heart and mind had been living in.  From that moment forward, each day has had more promise, seemed brighter and I've been happier in my own skin so it has been one of the absolute best decisions I ever made for myself.


Each of us has our own path to take and our choices are ours alone but the consequences of these options can be either damaging or life affirming.  I choose to no longer make harmful decisions and take my time before selecting what to do, whereas I used to behave rather recklessly.  This is my one chance at life and I intend on making the best of it.

Stop focusing on others and BREATHE!

I feel terribly guilty for not having written anything lately but to be honest, my mind has been quite blank these last few days.  Maybe it would be more accurate to say it has been more on the scattered side, than blank.  I start writing and my mind goes off in so many different directions that any thought I almost had, flies out the window and I'm left wondering what the heck I had wanted to write about in the first place.  Yup, cognitive difficulties!  I'm having those a lot lately.


I began writing this entry late last night but my mind is more clear this evening and I feel I should write about something that many have been commenting on in the MS RANT OUT LOUD room on Facebook.  The topic has been the announcement and interview with Jack Osborn on the television show The Talk.  I had not seen the show on the day it aired (June 20, 2012) but found the link a little bit ago and watched. Keeping in mind the absolute anger, rage even, that many have expressed towards Jack's reaction to the diagnosis, I was expecting to have a completely different opinion of the show, but I was pleasantly surprised.  Comments I have read ranged from his being in denial to his being the "wrong person" to represent those of us with MS to his being rich somehow makes a difference and will make his battle easier.  I have to disagree with all those statements.

I have been wondering, what if Jack Osborn is actually much stronger than anyone realizes?  It could very well be that he has not done enough research on MS quite yet and is choosing to put his attention on his fiance and their newborn baby girl rather than immerse himself in depressing facts centered on the life he will face with MS and I find this perfectly understandable.  Who could blame him?  I would try to concentrate on more pleasant subjects, too!  I remember how it was when I was first diagnosed and if anyone would have asked me questions, I would have been at a loss to respond in a way befitting the journey which had been thrust upon me.  Jack Osborn is only five weeks into his battle with MS.  I feel some compassion is needed in this case and I would hope anyone would give a newly diagnosed individual time to cope and understand what may lie ahead.

One of the points some had brought up was his being from a wealthy family and yes, this will make many things easier for him but it won't heal him.  The lovely Ms. Annette Funicello, of The Mickey Mouse Club fame, has not done well with her multiple sclerosis.  Comic genius Richard Pryor was diagnosed with MS in 1986 (age 46), was wheelchair bound by the mid 1990's and died of a heart attack at the age of 65.  David Lander, who played "Squiggy" on Laverne and Shirley was diagnosed with MS in 1984 but did not make it public knowledge until 1999.  Actress Teri Garr, who starred in the movie Tootsie with Dustin Hoffman, also has MS.  Apparently, her problems began during the filming of this movie in the early 80's.  The reason I am listing these famous people is that whether someone has money or not, MS can still hit you.. sometimes hard and other times not as much.  But this goes for anyone!  Sure, they can afford better power chairs and housekeepers and things like that, but they can no more find a cure than any of us.  And honestly, I do not wish a harsh prognosis on Jack Osborn but if his having MS will bring our disease more recognition than it has gotten, then perhaps this will be a new, positive direction in his life.  But I do not know anything about him so I should not even say this.  For all I know, he has cleaned up his life from what it once was (I read that he was a drug user in the past) and already had a great outlook.

All this being said, I hope everyone will focus on themselves and not worry about anyone else's battles quite so much.  We have enough in our lives as it is and to put so much energy on others is draining!  Take a deep breath and be glad you are still here to go on one more day.. one more day to smile, laugh, love and breathe in one more breath.