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Fast forward...

Jul 05, 2014 - 0 comments

Wow, I cannot believe that it's been so long since I wrote in my journal.  Life has a way to moving on whether one is ready or not or able to keep up with it.

Health wise, I am good.  No relapses since my diagnosis in August of 2010 and have been faithful to my copaxone injections.  It is mystifying to me that some people with MS stop taking their DMD's when they feel good. Yikes.  Until there is a cure, there is no stopping me from staving of my next relapse.  All I have to do is read some of my old journal entries to remember how incredibly life altering a relapse can be.

To be sure life is easier now with the girls in college.  It's a relief that they have grown to the point where they are spreading their wings and doing so well in their respective college environments.  It also means less activity in our home, which means more time for me and all the things I put on the back burner like traveling, gardening, girlfriend stuff, home improvements, doggie time, date nights with my husband and just slowing down.

Summer is here so the girls are home (YEAH) and we have spent a lot of time in the pool enjoying the sun, music and each other's company.  Heat sensitivity is still an issue with me but as long as I am in the pool, I rarely have a problem.

Next week I see my gp for my annual which includes a lot of blood work.  Fortunately she shares the reports with my neuro so he doesn't have to redo any when I see him later this month.  But this time of year means I will get my annual MRI.  HATE, HATE, HATE them!  Claustrophobia is real.  Since my neuro knows this he give me magic pills to get through it but still...

It's this time of year that I cannot deny that I have MS.  I do have tingling and various non painful sensations when I get over heated, which is so easy to do when it's summer in Texas.  In spite of my mild symptoms (when I am not in a relapse) so far in my journey with MS, it is always there, the possibility and really if I am honest, the probability that my disease will progress to the point where my life will be effected in a more dramatic way.

I continue to exercise regularly, like at least 5 times a week, sometimes twice a day during the summer when I get in the pool to swim and also maintain my gym schedule.  Who knows what will happen in the years to come. I can move now so I am going to continue to do so until I cannot anymore.

My food choices have gotten a lot more lax since my initial diagnosis.  My past relapses have been in times of my life when I have been eating very healthy and times when I wasn't eating so healthy.  It doesn't matter if food or diet effects MS symptoms positively or negatively, it's important to eat healthy for general health so I am cleaning my eating. The OMS diet is intriguing to me although I really ate very similarly when I was first diagnosed.  Perhaps I will have another discussion with my neuro about it later this month.

Getting overly stressed and/or getting overly tired are the big commonalities with my relapses so that has been something that I have tried to manage.  Yeah, it's been a bummer at times when I tell my husband, friends or family that I am just too pooped to do something but I know that I just cannot push myself like I did before my diagnosis. Fortunately, everyone has been pretty understanding of my medical condition.  Still I wish I didn't have to be so careful.  The exercise has helped with immediate daily stress relief.  And I just started to see a therapist to help me with my lingering grief over a family death two years ago.  This step should have been taken a year or more ago but life kind of got in the way. It's time, time to deal with the loss and the fallout that has changed the entire extended family dynamic. I am so grateful that the MS fatigue that is so common with so many is not an issue for me but the depression component of the disease is always lurking.  Lesson learned.

I see a massage therapist about 3 times a month to work on my shoulders and back. She has been a gem in helping me to work out those knots, and aches and pains of daily living.  Never have I taken for granted that I have the ability to afford the life I am living.  It's a challenge sometimes to make it all work financially but I will do what I need to do to make sure that I stay as healthy as I can for as long as I can.

As I said when I started this entry, life moves on whether we are ready or able to keep up with it.  It's best to embrace life's changes cause you really don't have a choice.  Life moves forward, sometimes fast forward,  and it's not good or healthy to be left behind.

Faking it

Jul 17, 2012 - 0 comments

Each morning I hope that today will be different but so far it's always the same.  Going through the motions...slowly, painfully, unbearably.  I cannot do anything easily, it's always a chore, a huge effort just to get the laundry done and the grocery shopping finished.

To the unknowing eye, the house looks fine, the dogs taken care of, the kids and husband reasonably content.  Underneath, it's a mess. Countless things not done because I simply cannot get myself to do them. Day after day I try but day after day only the basics get done. Does anyone but me notice I wonder that I am faking every waking moment?  Smile, make conversation, go to meetings, talk with the neighbors, etc... all the while my mind is on him and this void that is always there.

It was a month ago yesterday that he died.  Sometimes when I close my eyes and see the details of his face or hear his voice in my head, it's almost like he's right there next to me. Then it all comes back; that is all I will ever have of him now, those visions and memories.

No one could have a conversation with him about his cancer.  He wouldn't allow his mind to entertain the thought that the cancer would win. He would tell his son, my husband, that "nothing is going to happen to me."  I remember how stunned I was the first time my husband told me he had said that to him.  He pushed him as hard as he thought he could to make him see that things were serious. He just couldn't push him any harder.  Looking at it now, I think pushing him any harder would have forced my husband to face what was coming. He wasn't ready. None of us were ready.

Not intertaining the thought of defeat was how he deal with his cancer, and for a long time it worked.
We all drank the koolaid.  After all, his whole life was one of accomplishment and breathtaking achievement. He was never below average, average or mearly above average, he was  always off the charts.  And in spite of the chemo, he looked great and remained physically active. He would beat this. If anyone could, it would be him we all told each other.

I shared some of my journal entries with him.  Perhaps if I emotionally exposed myself to him, he would do the same.  Oh, he did open up but not for long and not the way I expected.  Maybe I should have pushed him more.  He seemed to be always right on the edge with me, right on the edge of just embracing it all. Was it denial on his part or just positive thinking? He was one of those people who was always in the zone. You know the kind. Nothing could shake him.

It was after his last hospitalzation that he talked about his grandfather and his fear of just being a faint memory to his grandkids. He wanted more and was determined to get it.  The cancer was so unexpected, so surprisingly shocking. If I listed everyone I knew above the age of 50 and had to rank which one I thought would be the next to get cancer and die in descending order, he would be very near the last on the list.  He took impecible care of himself in every way and his genes were golden.  His dad died at 98 not taking care of himself and his mother is still alive and independent at 100.

I tell myself that he probably would have died decades ago had he not taken care of himself but it still seems so unfair for him and for the rest of us who have to go on without him. I want to go on, I will go on but I just am not ready to let go in the way that one fully needs to to move on.

There are bad days when I cannot let go of his failed effort to stay with us.  He tried so hard. He seemed so confused when he had the stroke.  He, nor we, were not expecting it. We figured that we would have months, perhaps years more of his struggle to survive, and he would gallantly carry on until his body gave out.  A sudden death seemed so cruel because it just took him w/o his consent. Yet, I know that perhaps it was the least painful physical way for him to go.

The confusion is what I remember when I saw him the day after he entered the hospital.  Like a person with cerebral palsy trying to speak and can only contort their body and mouth.  Don't try to talk we told him.  His ability would come back we said. Just rest and give his body time to repair.

The repair never came. I feel like I lied to him. What did he want to say? What was he thinking? Was he afraid?  I pray to God that he found peace and understanding, just like I pray to God that we are able to eventually find it ourselves.  Until then, I will go on faking it until it becomes my reality.

He's gone

Jul 16, 2012 - 2 comments

The unimaginable happened. He's gone, his body anyway, but not the memories, or the love. My mind tries to fight against his passing. What can I do to fix this? What can anyone do to make him not be gone?  Time after time my brain hits the inevitable wall that nothing can be done, it's over, his life, our time together. No more memories will be created with him, no more shared experiences. The next time I see him I will be dead.

He was so funny, so positive and forward thinking. He never said an unkind word about anyone and was unfalteringly into making people feel loved and supported.  He, like my dad, was the only other person that I could never imagine dying. Too strong, too focused, too powerful, too much a part of my life to imagine ever not having him in it.  Yet he's gone. Stolen from all of us. Taken at a very young 75, with decades more to give to us and the world.

At first I was so sad, depressed really.  Everything felt unstable. I couldn't count on anything, I didn't care about anything.  Then the anger came. Why him? Why after he fought so hard and gave so much was he taken so suddenly?  Then like watching a moving, acceptance. What else can come next? There is nothing left but the god awful acceptance of reality.  His death has effected so many people and things around me.  Like dominoes, things have shifted, people's lives have adjusted to his absence.  A new normal is taking shape in spite of my fighting it.

New pictures have gone up around the house. Happy pictures, smiling faces, unaware and oblivious to the sadness and loss that was waiting just around the corner.  I see him now every day, smiling at me. He seems further away now.  The memories are there but they are duller than they were last week, or the week before last. With each new day the details of him become fainter and duller. I know how this works. I have lost enough loved ones to death to know how this works. It doesn't matter how much I fight against it, it's inevitable.  He knew this too.  This is what he didn't want to become, part of the past.  Like his grandfather, he said, he will become like his grandfather was to him after his grandfather's death.  He didn't want this for his grandchildren. He wanted more time with them, more opportunities, more experiences. With all his optimism, this was the one area that gave away his fear, his dread. He would become part of our past.

I am sorry, what else can I say but I am sorry.

The reality is this is what awaits all of us. This is death. This is life moving on in our permanent absence. In time even those who remember us will die and there will be nothing left but our descendants who only know us through pictures or grave markers.

Until then, I will remember him. Not as often as I once did but he was a part of my story and always will be. He, like my mother, I hope will be there waiting for me when my time comes. I imagine that for them there is no time as we experience it. We will be together again beyond the physical realm, eventually even beyond the memory of the living.

Bare Branches-taken from Leigh McElroy's blog

Jan 25, 2012 - 0 comments

Bare Branches

January 25, 2012

I'm not sure when the last leaves fell from the tall trees in the yard; our winter wasn't harsh enough to pinpoint a single killing frost. They seemed to come down all at once, though-whispering in the sky one evening, silent on the ground just a few hours later when I stepped outside, warm coffee mug in hand.

Now that the trees are bare I'm seeing birds I never noticed before-ten, twenty, thirty at a time perched in the branches and listing easily in the breeze. Each morning I'd go outside and wonder where in the world they came from...where they'd been before. Then I understood: I didn't know my backyard was so full of birds because all I saw was the luscious leaves they'd been perching in. They'd been there all along, but because I was focused on something else they were invisible to me.

Last night I had dinner with a dear friend...the kind of friend whose presence makes you breathe easier. A friend whose face is a familiar comfort , and whose heart has always been incredibly kind toward me. We talked about struggle, and its impact. She is a widow, entering her third year without the love of her life. Parts of her world that were once lush and full are now emptier. More bare. She is a teacher of the Word. One of my favorite teachers. One I've longed to emulate in her love and wisdom. She smiles sometimes and says her student has surpassed her. But I haven't. I don't believe I ever will.

"How has what you've been through lately changed your teaching?" she asked me as we nibbled plates of Middle Eastern food.  (I'm quite sure my struggles are nowhere near as challenging as her own. But she's not all about herself. When you're with this friend, she's laser focused on you.)

I didn't answer right away. I wanted to find the right words. But I knew the truth almost instantly. "Everything is closer to the surface," I told her. "More intense. More real. More vulnerable."

"Anything else?" she wanted to know.

"Yes," I said. "I love the people I teach more. Sometimes so much it hurts." Then I asked her the same question.

"I cry a lot more," she admitted. "And I do see their hurts. Even the invisible ones. I recognize their woundedness because I've been wounded, too. And I want to tell them the truth even when it's hard. There's no room for platitudes anymore."

Bare branches show us things we never noticed before. Bare branches bring things into clear focus-sometimes with a heart pang, but always with a surprising clarity.

I love the lush green of my backyard in summer. But the not-so-bright seasons have hidden treasures in them, too-and I wouldn't trade the sharper view for an endless string of sunlit days. Not now. Not ever. Because bare branches have a beauty all their own.

"Now that we know what we have-Jesus, this great High Priest with ready access to God-let's not let it slip through our fingers. We don't have a priest who is out of touch with our reality. He's been through weakness and testing, experienced it all-all but the sin. So let's walk right up to him and get what he is so ready to give. Take the mercy, accept the help." (Hebrews 4:14-16, The Message)


"Speak what you feel, not what you ought to say."