Monthly Archives: May 2013

Meet me for Coffee!

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We’ll set a time when you are free and so am I. No distractions please. You get a cup of coffee or tea at your house, and I do the same at mine. Then, whoever initiated the date makes the call, and we talk just like we would if I could see you. It’s really that simple.

If you’re ever limited in your ability to go out, it’s extremely important to keep your connection with others until you can do more. With MS, you can quickly lose touch; you don’t see it happening until it’s too late.  It’s such an unpredictable disease; you expect to be down for just a bit, but you never know. This withdrawal can lead to an unintended isolation, which leads to depression. It happens quickly. Friends call to talk and go places and you decline more and more. Your speech problems, your balance issues, your spasms, your fatigue. You really just don’t feel like going out.  Even talking on the phone can wear you out. It all takes so much energy. Eventually, they call less and you are relieved.

There are those few that hang in there. They don’t call as often, but they will still call, you can count on it. They’re the ones that understand because you’ve explained this to them when you were well, before the relapse. They call to say they don’t want to talk, the call is just to check on you, and to say that they love you.

Things you can do to make this easier:

1)      Most importantly, talk to your close friends when you are well. Explain to them how it feels when you are having a relapse, as best you can. Each relapse is different, but you can explain how things have gone in the past, and that they may be completely different but to please be patient.

2)      Send a blanket email or text to your selected friends.” I’m not answering calls or emails and such right now because my MS is acting up. Please don’t worry; I need to use my energy wisely.  Another note will come when I’m up to it. Meanwhile, keep the party going.”

3)      Answer calls when you can, but keep it simple. You don’t need to explain everything. “I know I haven’t answered your calls in a while but my MS is acting up and I feel crappy. Please call me back in a couple of days, (weeks, months).” Do not wear yourself out.

As soon as you can, do a little more. Start small. Answer more calls and even make some. Have coffee dates more often, and enjoy them.

Me and Ruthie 🙂300666_10200856069915856_673429886_n

COMMENTS: Please share the things that you do to stay connected that don’t require going out. We could use more ideas.

5 Comments

Filed under Mental Well-Being, MS and Depression, Riding Out a Relapse

It’s a Wheelchair kinda day!

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Its 86 degrees out side and a gorgeous day. We spend 8 hours on the Schuylkill River in Philadelphia. Our daughter is here with her college Rowing Team, Univ. of Pittsburgh, to compete in the DAD Vail Regatta. We are very happy to see her Row!

Phone call to Dad last night: “I’ve been to the race sight and it is HUGE, I think you should think about bringing mom’s wheelchair.

Slightly frantic phone call this morning:”Dad, I am here again and I am sure Mom will need her wheelchair. Are you definitely gonna bring it? There’s NO WAY she’ll be able to do this without it!”

Of course we put it in the trunk, and I am grateful that she thought of me.

But…we get there and we have a problem! My husband drives a wheelchair like he drives his car, like a TWELVE YEAR OLD. Needless to say, I am not happy with this. This place is in no way wheelchair friendly. Technically, it is handicapped accessible, there’s even a Handicap Port-O-Potty.  The rest is only good if you want to roll in a straight line, up and down the sidewalk all day.  I have my camera and this’ll never work! Huge loss of freedom. We are rolling along with the crowd, and everything I see around me is beautiful. If I were walking, I could stop on a dime to get the shot. I could turn around to check things out from a different perspective. You can’t do that in a wheelchair. I struggle with the guilt of having him stop. Finally, I can’t take it anymore and I say, “Stop, pull over”, and he does. Now it’s time to use ALL of my marital diplomacy. My daughter and I lock eyes and I see in her expression, fear of the unknown. I slowly rise from the chair and go around the back of it. I hold my husbands’ arm and speak softly in his ear, “Honey, I want to get out and walk. I love you and I really appreciate you doing this for me. I know it’s hard in this heat and with all of these people but, I really need to get out and walk. I am miserable in the chair. Taking pictures is impossible. I need to be able to turn and move around for the shot, and I can’t do that in the chair. It’s killing me.”

Husband: “But Bay, that’s crazy! In this heat, with everything so spread out, there’s no…”

Cut off by me:”I’ll be fine.  I feel very strong and Estizer will be with me. I’ll stop when I’m tired, and rest. We’ve even got our cell phones, so I can call you when I’ve done enough.”  I think this is a great idea and with an affirming kiss I turn and join Estizer in front of the chair. She holds my hand and we begin to walk away.

But wait- WHAT’S THIS?

He’s still here. I turn and say, “Honey, you can go and I’ll just call you!” He says, “No, I’m going to stay with you”. I’m mortified. I say, “What? You’re just gonna follow us with the chair? We’re gonna look retarded!” He looks away from me and with a defiant tone in his voice says, “YES”.

We start walking and he stays with us as if this is perfectly normal. I walk about 100 meters and in THIS heat, it feels like a hundred miles. I need to stop and rest, but I’ve pushed it (determined to show him that I can do this). I don’t see anywhere close to go, and I need to sit NOW. I turn towards him and we connect.  We do that mind link thing, that married couples do.

Without a word, he says to me,” I knew I was right! It’s too hot and you shouldn’t be doing this”. Also, with no words, I say to him, “I love you and yes, you were right. Thank you” Then, I sit.

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Comments and Thoughts:

How does the heat affect you?

15 Comments

Filed under Long Loving Marriages, MS and Family, MS and Marriage, Riding Out a Relapse

When MS gives us apples, make APPLESAUCE!

Student: “Miss Estizer why do you sound like that?”

Me: “Like what?”.

Student: “It’s gone now…NO! Like THAT!”

Me:”Oh…that. Well, I have something called MS, and sometimes it makes me talk funny. But, don’t worry, it’s not contagious.”

bigstock-Applesauce-being-made-using-a--30407207B-Smart after-school Photography class for At-Risk elementary school children, held at “The Banana Factory”. Provided by ArtsQuest, a non-profit arts organization that celebrates the arts in Bethlehem, PA.

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Student: “Why does it do that? And how come it goes away so fast. I thought you were doing it on purpose.”

Me: “Nope. It’s something that I can’t control. MS messes with my nerves. Do you know what your nerves do?”

Student: “Yea-uh. Well, sorta. They make your body move, right? But, they don’t have nothin to do with you talking.”

Me: “That’s half right, but they do soo much more! Blink your eyes, now swallow, now pull your hair. Did you feel all of that? Good, then your nerves are working great. Nerves do almost EVERYTHING in your body. They send messages to your brain and you don’t even have to think about it most of the time. When dust or smoke is around, your eyes just blink, right? When you want to drink a soda, you swallow, right? Did you have to say…ok throat, swallow now?”

Student: “Ewww, how about when you have to pee?”

Me: “Yeah…that too. When your bladder is full, you have nerves that take that message to your brain.”

Student: “And what about #2?”

Me: “Ok, ok, ok…I think you got it!  Sometimes my MS interferes with the way my nerves send the messages to my brain. When you hear me talk like that, my brain received a messed up message from my nerves. Or, the message was broken up, like your cell phone does sometimes, and my brain is confused.  Then, my nerves go, “Oh snap”! That wasn’t right, and then my nerves send it again- the right way.”:)

Student: “When, when, when you talk like that, you sound like you got applesauce in your mouth!”

Me: Laughter. When I try to speak again…it happens.

Students:  “Hey, hey, hey, SHHHH! There it is again! It DOES sound like applesauce!” The students that didn’t hear it before are now amazed.

Me: “Wait, wait, wait for it… it’s gone again, my nerves are working just fine now:). Yay! We can get back to work.”

The next time it happens, a few minutes later, the kids close to me hear it.

Student:  “Hey, hey, hey!! It’s here again! SHHHH and you can hear it too!”

The class goes silent and the kids and I make a deal.

Me: “When ANYONE hears it, they’ll tell the rest of the class, and everyone will be quiet and wait for it to pass. When it happens I can’t teach right, because I can’t talk right. If you guys keep talking, I’ll have to wait for you to be quiet EVERY time, and that’ll take forever. We’ve got cool things to go out and do! So how about you all just be quiet EVERY time it happens, and wait a second for my nerves to get straight. THEN I’ll keep going”.

OLYMPUS DIGITAL CAMERAIt became a game, it was genius. I couldn’t have planned it better if I had tried!

 

8 Comments

Filed under Ilness and The Arts, MS Symptoms, Riding Out a Relapse

Tecfidera Doubts, I don’t THINK SO!

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Tecfidera has only been approved for about month. I started taking it 5 days ago, and, wouldn’t you know, eyebrows are already raised. There have been some reports floating around about a possible connection between Tecfidera and the development of progressive multifocal leukoencephalopathy (PML), a viral infection of the brain that usually leads to death or severe disability.

This is what I have found so far, only 4 psoriasis patients in Europe who have been treated with drugs that contain Fumaderm over the last 19 years have developed PML. 347 MS patients using the drug Tysabri, which also contains Fumaderm, have developed PML. That’s since Tysabri was approved in 2007, only 6 years ago to treat Relapsing Remitting MS (RRMS). So, it seems to me that PML does not become a threat to my health unless it is used in Tysabri, to treat my MS.

My reality is:

I’ve had RRMS for almost 20 years.

I began taking other disease modifying drugs (DMD) about 17 years ago.

Until now, I’ve not been overly concerned with progressing to Secondary Progressive MS (SPMS). What makes now different? I stopped all DMD roughly 2 years ago. A little more than 1 year ago, I entered the most severe relapse that I’ve had to date, and it has lasted more than a year. Could it be that the DMD’s had delayed my progression to SPMS. By stopping all DMD drugs, could I have allowed SPMS an opportunity to take hold?

I did not take the earliest approved oral DMD because my Neurologist encouraged me to be patient and wait for Tecfidera, based on the limited information there was about ALL of these drugs. He deemed Tecfidera to be the best for me. He also wanted me to continue the DMD that I was using, until Tecfidera was approved.  I did not.

So here I am, 5 days into Tecfidera, with this new information. I am not the least bit deterred.  In a perfect world I would give any new medicine more time on the market before I used it, but my world is not perfect. I am now 50 years old and at a crossroad. If I were to wait 10 years before going back on a DMD (so the drug could be on the market longer), I would be that much closer to SPMS. I’m not willing to wait any longer. All of the data indicates that taking Tecfidera is not a life threatening-risk.

As MSers, these are the most difficult decisions to make.  No one should be judged for the choice they make, unless you are willing to take the disease, life WITH IT, and all of the uncertainty of its future.

I wish us all well,

Estizer

 

 

 

 

3 Comments

Filed under MS and Disease Modifying Drugs, MS and Oral Medication, MS Drugs

Tecfi-WHAT? Candy for my brain!

Tecfi- WHAT??

brain.candyCandy for my BRAIN! My new MS disease modifying drug (DMD)

Yeah, that’s right …I’m on a new MS disease modifying drug that I’ve never heard of, and it was only approved by the FDA last month! I’m the one who wants everybody else to take these drugs for a few years first, so that I can see what happens. Well, guess what? I don’t have a few years to wait.

Reality check: This disease existed a bazillion years with no help in site, so, it’s time to take action; well, more action. The very first drug was approved just as I was diagnosed. I started taking it a couple of years later; I was scared because it was so new. Now, they’re coming out so fast, I can barely keep up. Years ago, when my doc felt like I had reached the “glass ceiling” of Avonex (injected once a week), I switched to REBIF (injected three times a week). REBIF worked well enough, until I couldn’t tolerate it any longer. It, or ANY of the injectable medicines. After being on those for so long, the side-effects just wore me down. How lucky am I for this “burn-out” to occur, just when so many other drugs are being approved. Gilenya, Aubagio, Tysabri, and now…TECFIDERA!

I take a Tecfidera capsule twice a day and that’s IT; no more SHOTS! It’s the new “candy” for my brain.  I do look at it that way, when I think about the difference it will make on my future. It has also been known formerly as, BG-12, which is a super big plus to me. Back in July 2012, when I saw my favorite Neurologist, he promised me that “very soon” there would be two new drugs approved that he would agree to me taking. We have a great understanding; he knows what’s important to me and I know those same things are important to him, so I trust him. I call him “OZ, The Great and Powerful”. BG-12 was one of those drugs.

In clinical trials, it rivals the other disease modifying drugs in, relapse and reduction of disease activity shown on an MRI. Another super plus on my list – it has been used in Germany for decades, at much higher dosages, to treat Psoriasis.  There is still that little question I have about the blood brain barrier, and how THAT’S affected by this drug in the MS brain. If anyone knows, please tell me. Otherwise, we’ll find out in due time. What we DO know now, from its use in Germany, is that it does not cause death (that’s kinda important).

The lack of side effects pretty much sealed the deal for me. The most common one is, “flushing”. This lessens and usually goes away within the first month. It’s a sensation of heat, or itching, and a red blush in the skin. HA! That’s MENOPAUSE for a month; you don’t scare me! Bring it on!

Candy for my brain:)

Did I mention that this candy costs $8,900.00 for a one month supply? Have no fear…co-pay assistance is here! I pay $10.00 a month, and so can you. The drug company has a $10.00 co-pay assistance program. There are no income requirements.  You can enroll every year, as long as you take Tecfidera. People covered by Medicare, Medicaid, the Va/DoD, or any other federal program can get help from MS Active Source with the cost.

THIS IS NOT A COMMERCIAL! I do not work for the drug company. I am just starting a new medicine that I’m excited about. I want to share:)

COMMENTS and THOUGHTS: What have your experiences been with Tecfidera?

10 Comments

Filed under MS and Oral Medication, MS Drugs

Fear and MS

Monsters, INC

Let’s talk about scary! When I was first diagnosed with MS, I made a conscious decision to stay far away from all things MS. It all scared the begeebee’s out of me; I wouldn’t even read the National MS Society magazine because of those scary aids and pictures in the back for mobility assistance devices. To think that one day I might need one of those was too much for me. I’m ashamed of the fact that I was even afraid of people with MS, although I didn’t know any. I couldn’t face seeing what I knew might happen to me.

For the first six years or so, I didn’t get the magazine. One day I was in my husband’s home office and I went in a drawer and found not porn magazines… but 6 years worth of National MS Society magazines! He had been getting the mail every day, as a part of his routine, so I just never noticed. In that time he researched everything he could about MS, my symptoms, and my drugs.

The most important part for me is that he never let me know…ever. Not one statistic or sad story…nothing. I think he saw something in spite of my upbeat, optimistic, cheerleader self, that was dark, and it came with my diagnosis. It was fear. Over the next few years, I took it in, in very small pieces. I eventually found a very good doctor whom I could talk to, and I trusted. It was always about just me and what was going on right in that moment. Never about what could happen.

But now, I want to know EVERYTHING, so bring it on! I have a better understanding why MS is called the “snowflake” disease. Like snowflakes, no one person with MS, is exactly like another. I also realized that not everything I read was going to happen to me.

My practical advice to you is:

1)      Be your own advocate. Learn all that you can about this disease; be sure, though, to keep it just to what is happening with you in this moment. You can eat an elephant, only one bite at a time.

2)      Find good doctors; shop around. Communicate well with them and insist that they do the same with you. You will create a “team” and you are the Quarterback.

3)      Stay away from the internet, except my blog of course (LOL). As I come across blogs to suggest, I will post them. There IS good information out here, but limit your surfing. Carefully choose a few blogs to follow that have the tempo that suites you and ONLY do research using legitimate science and health sites.

4)      You will need help; you will need support. Get it – a spouse, a friend, a mother, a sibling, even a child. You may need to say “I need you. Please stay informed about this disease for me. Or with me”. Explain that it is overwhelming and frightening. Explain the “snowflake theory” as well. For goodness sake, whatever you do, don’t get someone as freaked out as you.

5)      A Clinical Psychologist has also always been a part of my team. Again, shop around.

6)      Last but not least…ask me! I will do my best to help you with whatever information and support that I can.

7)      Oh…and breathe!

COMMENTS and THOUGHTS:What was your experience when first diagnosed? Will you share your strategies to overcome the fear?

3 Comments

Filed under Uncategorized

So…I’m positive.

Doc: It came back positive.

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Me: silence, then soft…”Damn, I guess I’ll go to plan B.”

Doc: “Now this doesn’t mean…“ I cut him off

Me: “This is actually good. Just yesterday I wanted to go with Tysabri, but, that brain infection thing was starting to give me cold feet. I’m not so sure I was comfortable with the risk.”

Tysabri alone is not the problem. If you test positive for the JC Virus, along WITH treatment with Tysabri, that’s a problem, or it can be. Patients who test positive with the JC Virus are more susceptible to PML; Progressive Multifocal Leukoencephalopathy,  a viral infection of the brain that usually leads to death or severe disability.

Doc: “You can still take Tysabri if you want. These are the 3 things to consider that would work against you: 1) If you’re already on lots of other medicines because you’re dealing with multiple health issues 2) You’re positive for the JC Virus, and 3) You’ve been on Tysabri for more than 2 years. Since you have only one of the three, the JC Virus, you could still take it.”

Me: “I‘ve already decided that Aubagio would be it, if I couldn’t take Tysabri? Are there any problems with it?”

Doc: “Well, it could compromise your immune system. It’s actually a “baby chemo” drug. It attacks rapidly dividing cells, like cancer cells; it is thought to slow the progression of MS by attacking in the same way, the rapidly dividing immune cells, which attack your myelin. Here in lies the term, “baby chemo” drug. Attacking these cells is good because it is thought to slow down damage to the myelin sheath, but, it also reduces the number of important immune cells.”

Me: “Well Tysabri is out for me, and you say Aubagio is a baby chemo drug. What if I get breast cancer in, say 2 years, and I’ve taken Aubagio? Will I then, not be able to receive the chemo that I’ll need because my immune system has been compromised? Or, might it be less effective?”

I could hear him thinking, O.M.G! W.T.H! Where did this lady come from?!

Doc: after a short pause, “No, not really. There is another drug I want you to consider. It’s only been approved by the FDA for a few weeks. I want you to goggle it and tell me what you think on Monday. We’ll make an appointment then for you to come in and sign the paperwork.”

Me: thinking, it’s only been approved a few WEEKS! Are you crazy?

Doc: “I don’t usually jump in like this, but, I’m sure this is the best drug for you. I’ve gotten to know you, and if we wait for you to decide, it could take MONTHS. You prefer more holistic approaches, and you’re asking me questions about cancer! This is the least potent of the three. The results from the test studies are good. It’s also has an excellent safety record. Things would have been different if you had come to me at the age of 22, with LOTS of active lesions, and symptomatic. You would have been a good candidate for Tysabri, our even Aubagio. We’ve talked about this at length; with 20 years in, there’s very little that a stronger drug will do for you. It’s more sensible to go with the lesser of the three, while continuing to protect your nervous system.”

Me: pause, “Okay Doc, how bout I research it, come in on Monday, and then I’ll let you know which one I’ve decided on.”

Doc: “No. This is the best one for you. You do the research and then come in and sign the paperwork so we can get it started.”

Plan B: I start the new medicine, tomorrow.

COMMENTS: Are you on any of the “new” disease modifying drugs? Have you tried more than 1 DMD? Why did you switch?

7 Comments

Filed under MS Drugs

Monsters, INC.

There are monsters in my closet, waiting to emerge.

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“You’ve got active lesions in your brain”. That’s what my neurologist said to me as we looked at my brain MRI. My response: “So what…that means nothing, you’ve probably got’em in your brain too. Have you ever looked?”

I learned a long time ago that MS symptoms and lesions didn’t necessarily go hand in hand. You could have symptoms with no lesions, or lesions with no symptoms. You could have many lesions with very mild symptoms, or a few lesions with lots of symptoms.  So…I think the “monster in my closet” approach is one way that doctors try to scare new patients into taking these disease modifying drugs(DMD).

Don’t get me wrong; I love the drugs! I’ve been on them since they were first approved by the FDA. I believe they are ONE of the reasons that in the twenty years that I’ve had RRMS, I have not progressed to SPMS. Statistically 50% of all patients 10 years into the disease, do progress from RRMS to SPMS. I wonder if that statistic was calculated before the development of the first disease modifying drug in 1994. If so, I would expect that statistic to be even better for patients diagnosed after 1994 who have had the benefit of these drugs.

The good news is active lesions along with symptoms, means that I’ve NOT progressed into SPMS. If I were symptomatic, with NO active lesions this far into the disease, that would be indication that I had moved from RRMS into SPMS. So, YAY for my active lesions! This also says to me, this relapse will end (remit).

The moral of this story is…make no decision out of fear. I will choose a new DMD very soon; not because there are monsters in my closet waiting to emerge, but, because I believe these drugs have had a positive effect on the course of my disease.

IT’S NOTHING PERSONAL; IT’S JUST THEIR JOB.

Thoughts and Comments:

Have you decided to use any of the DMD’s?

If so,do you feel that they have helped at all?

ps. I’d love for you to join me on Facebook: https://www.facebook.com/pages/MS-Open-Mic/579107032117769?fref=ts

and Twitter: https://twitter.com/EstizerSmith

10 Comments

Filed under MS Drugs, Neurology

“Cloud Atlas” Past. Present. Future. Everything is Connected.

Our lives are not our own. We are bound to others, past and present.

Cloud-Atlas1

We had been together 24/7 since Monday, and that’s three days…we needed a break.   He left in a huff, and I was relieved to see him go…ANYwhere! Kyle and I did some work around the house; me, too much, but it felt good after being idle for so many days. Hurricane Sandy had hit the East Coast with a vengeance. We didn’t know it then, but we were only three days in, to seven days of no electricity or HEAT.

He came home to take us to see the movie “Cloud Atlas” with only 20 minutes til show time. This meant, he’d drive like a bat out of hell, and it would give me that sick and dizzy feeling. I didn’t want to complain, or be a “stick in the mud”, so I went into the other room, out of sight and announced, “you guys should go, I’m gonna stay home!” Instead of saying okay and leaving, which is what I wanted him to do, he came into the room where I was, as if he hadn’t heard me. When I tried to go the other way, I stumbled and he caught me. “He said,” what’s wrong, do you not feel well?” “No I don’t. (voice cracks…dammit!) I’ve been wobbly all day, especially this evening. I did too much.” I start crying. He moves in slow and gently, puts his face next to mine and whispers, “its okay…we’ve got time.  We’ll go slowly”. I say, “No, we don’t, that’s just it. We’ll be rushed, and I can’t do that. There’s not enough time, which means you’ll drive fast, dropping me off at the curb. I’ll have to rush in, buy tickets and get seats. I’ll be all by myself, you’ll be parking. No, you guys just go.” Not crying anymore, and in a convincing voice I repeat, “You guys just GO”.

He says” but, we’ve got Kyle” and I am suddenly filled with thoughts of our daughter. I say, “But he doesn’t understand!” She would be there, without hesitation, explanation or embarrassment.  Now, he says with certainty, “we’ll MAKE him understand”.

It becomes clear now. Kyle didn’t understand because he had never seen me like this. When they were younger, we always managed without involving the kids. I’m sure it was to protect them, or so we thought. We did things so that I didn’t need their help. This current relapse has been the worse to date. When it really got into full swing, Kyle had moved out. He was just with us now, because of the hurricane. His sister however, had been here through it all. Kevin was right…we just needed to explain to him exactly what I needed…make him understand. Kyle was a novice, and a little unsure of himself; but with just a bit of guidance, we were off.

Movie Review: The movie was, very thought provoking, with a complex plot; the kind that I will need to see again to fully grasp. The basic concept was that the universe exists in parallel layers. We enter those layers at different times and as different people throughout time…hence, the experience of deja vu. Kevin and Kyle give it thumbs up.

My reality; if I’m lucky, I’ll live to be MUCH older. I’ll need my family even more. It’s taken me a long time to get to this point of acceptance. It’s only fair that I give my children the same kind of “processing” time.

As far as the movie goes, I’m open; but for now I’m still working to connect the, past, present, and future in THIS layer of the Universe.

I also had a conversation with myself about relaxing. I didn’t want to burden anyone by being needy. I also didn’t want to bring everyone down by whining and feeling sorry for myself! So, I flipped a switch in my head. Instead of dwelling on the fact that, it was late, I’d need help, my daughter wasn’t home and I hate my husband’s driving; I simply counted my blessings. My husband love’s me and is a selfless caregiver. My kids have both grown to be wonderful, compassionate young adults, and, who gives a shit if we’re late to a movie.

“Our lives are not our own. We are bound to others, past, and present. By each crime and every kindness, we birth our future.” ~Cloud Atlas~

COMMENTS and THOUGHTS: How has needing others affected you? How has being needed, affected others in your life?

Did you see this movie, or read the book? What did you think?

3 Comments

Filed under MS and Family