We’ve Moved!

November 16, 2010 at 9:42 am (Uncategorized)

Please visit the new blog site at: http://phandthenewnormal.blogspot.com/


Permalink Leave a Comment

Finding A Voice

November 10, 2010 at 12:11 am (Uncategorized)

So, if you know me at all, you know I’m not exactly quiet. But the truth is, I’m still pretty shy sometimes. Public speaking has never been my thing (unless you are a room full of six year olds, then I’m all good!).  But, I’m also pretty vocal and I’ve found the relative anonymity of  working online to suit my personality very well. It gives me time to think out what I want to say, to change it six times, to stress over it and change it three more times after that, and t0 finally put forth to whomever cares to read it something I really want to express.

I believe that when you have something like PH you simply can not sit around waiting for something better to happen to you, and you must take your destiny into your hands by being proactive. For some, this involves fund raising. It turns out I am not one of those people! I’ve done fund raising and quite honestly, I don’t like it too much! I admire those who do it so well, but it makes me uncomfortable to ask for help. What works for me though is writing about my experience (clearly, a lot!) and what I know (some, and a little more everyday). It has become my message to other patients and their families that each of us must find our voice, whether it is through fund raising, or networking, or writing, or art, or… well, what’s your voice for PH?

A few months ago I was approached out of the blue and asked if I would be interested in speaking at the annual meeting of the REVEAL registry (www.revealregistry.com). In short, this is a massive national study that is endeavoring to put a modern face to Pulmonary Hypertension. The hope is that the new data will drive more focused research, better treatments, and ultimately a cure.

Would I like to speak to about 130 people who are instrumental in making this study happen: doctors, nurses, respiratory therapists, project managers, etc. Um, no, I was shaking just thinking about getting up in front of all those people…. and YES YES YES! What an incredible opportunity.

The YES! won.

So, in early October, I traveled to Boston and did just that. Writing the speech was a process. I sat down one night and banged out seven pages (about 15 minutes worth of talking). Then I started my obsess, revise, obsess, revise thing. As I said to my audience that night, “What does one say to a room full of people working to make your deepest desire come true – a cure for Pulmonary Hypertension?”

The general assignments I was given was to put a face and a story to the data – “A Day in the Life of a PH Patient” kind of thing, I guess. I’m okay with that, I don’t mind telling my story. But I also wanted to tell our story, the story of the PH experience… how any doctor that isn’t a specialist often risks a PH patient’s life because they simply do not know better, how medications and the fear of the future effects a patient’s ability to cope, how there are patients out there who get to defy every odd and how they inspire me to keep fighting. Many of my PHriends  all chipped in their ideas and stories, helping me to shape what I ultimately would say.

The biggest message that I wanted medical professionals to come away with is that when they are treating PH they are treating a whole person, one with hopes and dreams and fears. I’m sure on some level they know that, but the clinical needs can trump other parts of a person’s needs during a routine appointment. I’d like to share the same idea with you, and to that end, here is a brief excerpt of what I spoke about that night. I hope it inspires you to take care of your emotional needs if you are a patient, to understand your loved ones needs if you are a caregiver. And if by chance you are a medical professional, I hope you can remember in the midst of all the incredible physical care you give us (thank you) to step back and say, “and how are you doing with all of this?”.

Having PH is like having a dark crystal ball. You know all the statistics. You know the words “degenerative” and “incurable” are ultimately pretty true. It is a little like living your life just waiting for the darkness to fall, and that is no way to be. So, in so much as is possible, I choose not to be that way.

I have a son to raise. Failure to do so without all the vivacity and energy I feel he deserves from me is simply not an option. Truth be told, if PH can be beat by pure stubbornness, then I’m your girl. I’ve been both credited and chastised for my stubborn Irish ways, but either way, I am quite sure the unstoppable fight in me takes some part in my ability to not just survive PH thus far, but to actually truly thrive with it…

In a particularly rough time a little over a year ago, a wonderful man with heart problems of his own gave me Dr. Bernie Segal’s classic, “Love, Medicine, and Miracles”. Through reading that book I came to the profound understanding that I needed to take spiritual control of my destiny with PH. I truly gave this whole thing up to God, and took the very conscious path of thinking always in positive terms, always with the belief that the cure will be found.

To say this and to live this are two different things. It has to be with every fiber of my being, or I loose a little strength and a little of my fight with each negative thought that enters my mind.

This is not to say I don’t have bad days. I am a strong patient. I am a strong woman and mother. But, a rough appointment or a scary test will still sideline me for a while. My smile and spunk in the doctor’s office, or the positive report to my parents on the phone, can turn to torrential tears when I am first alone after rough news.

I have learned to give myself permission to feel these things for a while, and then to pick myself back up, dust off, and begin again with new resolve. To deny the crappy hand I have been dealt with PH would be unhealthy, to wallow in it would be the same….

(and later)

Co-leading Generation Hope has given me a sense of purpose. Before it started, I was sitting around hating PH, but not too sure what to do about it past that. Now I feel like my ability to share my story, and my assurance that I can rest on these people when I struggle, makes me feel stronger and more powerful against the disease than ever. I hope every patient is encouraged and inspired to find their own outlets and their own ways to fight back.

Permalink 2 Comments

If you have to be here, it’s worth being HERE

November 5, 2010 at 11:27 pm (Uncategorized)

Wow, so here we are at the one year (and 3 days) anniversary of this blog! Yes, the time for PH Awareness Month has rolled around again. The time of year when I resolve to write here more than once every couple of months.

I want to start out on a positive note because this year has been, by and large, very positive PH health wise. There have been ups and downs, and a lot of it has been chronicled here over the months, but really, I can’t complain too much.

There have been two huge highlights for me this past year. I think I’ll start with just one for this post.

The first was attending the International Conference in June. What an experience. To sit amongst over 1,000 people who actually get what I’m going through is amazing. The Pulmonary Hypertension Association rocks. They have this way of bringing together patients, caregivers and doctors onto this level playing field I suspect you don’t see too often in medical communities.

I sat in on sessions led by doctors, and some led by patients. I had breakfast with doctors who could answer my questions. I had some questions that couldn’t be answered, but that’s okay. I got to participate in several research projects by visiting the research room and lending my data, and feedback, and many vials of blood.

Most importantly, I got to meet so many patients I have only known online. I was able to channel all the work I’ve been doing over the past year or so and help mentor and lead groups of patients too. That was pretty cool. I was the welcome person for the young adult meet and greet room on the first day.That kicked off meeting this wonderful couple who had traveled all the way from Israel just to find help and resources for their daughter. PH is rare all over the world.

The really cool role I was asked to play was to sit on a panel of “The Next Generation of PHA Leaders”. It was really an honor and a surprise to be asked. I sat up on stage at breakfast one day with a few other go-getters. Two of my co-panelists were fundraiser extrodinaires, and one just happened to have participated in a half-ironman with his PH! Me… I talked about this blog, and co-leading Generation Hope.

There were two particularly poignant events for me. The first was finally meeting patients who just defy my every understanding and expectation of Pulmonary Hypertension. There were some there who are true athletes, and others living lives that the statistics just say aren’t possible. Screw the statistics, I’ve met those people, and am working myself like crazy to become and stay one of them.

The second was listening to Carl Hicks speak. Carl was the outgoing chairman of the board this year. His beautiful daughter Meaghan passed away from complications after her transplant. To hear Carl speak, to see a father wipe away tears for his daughter, but strengthen his voice and his resolve even as he struggled, was both heart-wrenching and inspiring. I cried every time that man got up to the podium. His emotions were raw, and his reason for fighting, for still fighting after his loss, was so powerful. I am beginning to realize many of our PHA leaders are in his shoes, having lost loved ones to this disease but carrying on their memory and their fight long after the loved ones have moved on to finally breathe easy.

We’re really blessed in this community. If we have to have this absolutely shitty hand dealt to us, then I at least don’t want it to be anything else and I don’t want to be involved anywhere else. The advocacy of our community has brought us from zero PH therapies in 1994 to eight different approved medications now. The average survival rate of around six years is still absolute crap, but it is also triple what it used to be. There are eight more drugs in the FDA pipeline that show a lot of promise, and dozens of other research studies going on.

Our doctors are real people who see their patients as real people. When I ran into my docor at a conference last year,  he greeted me with a warm hug. I had the privilege of meeting who I consider to be one of our nation’s premier PH specialists a few months ago (more on that later!) and when I e-mailed him to thank him for his time, my response a day later was signed with his first name, no DOCTOR! formality needed.  My nurse and I exchange technical questions and e-mails, followed by “and how are your kids?” I admire these men and women who have dedicated their professions and their lives to saving us. The work they are doing is inspiring and I am deeply grateful.

The Pulmonary Hypertension Association is the heart and soul of it all. They listen to their members like you wouldn’t believe. They inspire research, raise unheard of funds, and even help move legislation through Washington. No small feat in the current political climate, but we’re doing it! (Want to help? Click HERE). Most of all, they provide a place of support and refuge for patients. And not just patients in general. They’ve managed to reach out to all these little sub-groups and create communities within the larger PH community. They gear up for and then sponsor conferences around the country, and then awareness month.

Well, awareness month is here. Wear your periwinkle of Fridays. Tell a friend about Pulmonary Hypertension. Tell them about me if you want. But just get the word out there.

Permalink 3 Comments


October 30, 2010 at 11:15 am (Uncategorized)

I am such a mess of emotions right now. From angry to humbled and heartsick, it’s been a hell of a ride these last few days.

I’ve spent the last week battling my specialty pharmacy company over a medication delivery. They’re not innocent, so I’m in no mood to protect names. Curascript is on my hit list right about now.

Long story short, I followed up on a medication delivery no less than four times, which then never showed up. Once I called customer service and just about set the rep’s ear on fire, I was ASSURED and PROMISED that my medication would be arriving today. Bullshit. None, nada, and I have run out (well, they think I’ve run out, I’ve kept a secret stash from the last time they screwed up, but shhhhhhh!)

I’m annoyed on one level and was (I’ll explain the past tense in a moment) livid on another. See, the thing with Curascript is that they require that you sign for your delivery of medication. Incidentally, the other specialty pharmacy who handles PH meds does not.

This is problematic on many levels. First of all, I’m not home bound. I’m blessed to feel well enough to live the life I’ve chosen, and that means some mornings I work and others I am out and about with my son. Not everyone with PH gets this choice. My medication allows me to do that.  Staying home for a four hour window for a delivery is a huge inconvenience.

This time though, it got personal. To stay home on Friday for the  medicine delivery that never came I had to miss my son’s preschool Halloween event. It’s a little silly to be upset about something small like that, but the truth is my moments are precious. I believe I will beat this thing  and I will live. But the odds are completely stacked against me. The odds say I’ll be lucky and unlikely to see him out of grade school.  I don’t get to have another kid and do it again, because childbirth is deadly.  So, to miss even a second, when I’ve committed to be there, becomes gut-wrenching for me. I don’t think I even realized how important these moments had become until I was denied one by someone’s stupidity.

I was also going to have to miss his soccer game this morning, but my dear friend and neighbor agreed to be on lookout for the package that still never came so I could go cheer him on. I am really blessed by the friends and family around me.

So, yesterday and this morning I was ready to roll heads. How dare some pharmacy company screw with my life? I got a little Momma Bear, I guess. Or, as my dad says, I really “got my Irish up”.

Then, I log on to facebook. And I find out that a girl whose story I have followed since my diagnosis has died from complications from her PH. She was 21. And now what? I can’t exactly stay mad over an inconvenience caused by my pharmacy company and ultimately my illness when someone else has died because those medications stopped working for her and her transplant attempt failed. Suddenly, my problem seems pretty minuscule in comparison.

So, as I sit here still wiping tears for Becky and her family, I’m reminded even more acutely than I was yesterday how precious every second is. How even as I felt foolish yesterday for being angry at missing some Halloween pictures of a bunch of four-year olds, I was somewhat justified. If we don’t find a cure for this blasted disease, the sadness Becky’s family feels at this moment, is the sadness all our families face, and that’s really hard to swallow.

Go hug someone you love.

Permalink Leave a Comment

Crap Isn’t So Bad, I Guess

August 5, 2010 at 8:44 pm (Uncategorized)

Once again, this woefully under-updated blog stalks my mind until I sit down to write. Thankfully, I have work I am supposed to be doing and wish to procrastinate, so now seems like a good time to give in.

Let’s see… a really cool thing. Okay, freaking amazing thing.

I climb hills. No big deal to the average person, but may as well be Kilimanjaro to a lot of PH patients (more on that another day!). May as well have been Kilimanjaro to me not so long ago.

So, when I last left this blog I was having another Cardiac MRI, but hadn’t got the results back yet. Well I got them, and they were CRAP. I mean rotten. I mean my heart is huge, my hemodynamics suck, and I think medical professionals might turn just a little pale when they see it. I, on the other hand, just get nauseous at the sight of those pictures.

So, I sit in my doctor’s office talking to the nurse practitioner, a woman I have grown to love and admire these past couple of years. I depend on her for straight answers and a soft voice of reason. I’m arguing with her about the results, but really, I’m arguing with myself. I just can’t believe they are so bad, when I feel pretty darn good.

I left the office, got in the car, and cried my eyes out. Then I drove home and cried some more. I may have screamed just a little. Which is weird, because I don’t do that. But the thoughts “I am going to die” did cross my mind. And I had to fight them back with everything in me, and call on everything above me to help that.

See, this past winter, I felt like CRAP. More crappy than I ever have felt before, more crappy than I would admit to anyone else, and (let’s be honest) more crappy than I would even let myself acknowledge. But, if you look back at pictures from this winter and see the pale puffy me, and as I remember how dead on my feet I was feeling a lot of the time, I have to (hate to) admit it.

But then I did a lot of good for me things, like kept up with my acupuncture and holistic treatments, started Tyvaso (see post below), and started exercising. Here’s the amazing part – not just exercising, but like actually working out. Doing the Wii Fit. Jogging. Yes – JOGGING. Not a lot – but a couple of minutes. When I started, that couple of minutes put me on the couch totally dizzy and out of breath, heart pounding. But now that I’ve been at it for a while it is actually getting easy.

I was heart broken that the test results didn’t reflect all that.

So, how do I put together how I feel and how I function with how my tests look? I can’t – but I do attribute it to a higher power (God is very good to me!), the incredible support I receive,  and a whole lot of tenacity on my part too. I don’t think the medical professionals can actually explain all this either. And I’ve decided it doesn’t matter… because look what I can do…

This is the hill I was walking with a friend the first time I ever felt PH symptoms, about three years ago. I was pushing my infant son in a stroller. We got to the top and turned around, and suddenly it happened. I handed off the stroller and knelt to the ground, gasping and heart pounding. My friend said I turned gray. I had no idea what was wrong, but was soon to find out I had severe Pulmonary Hypertension.

A few weeks ago, I went out and climbed that hill again, this time symptom free. The test results may not look any better, but I am  living, walking, breathing proof that there are miracles and the tests only tell you so much.

I leave you with that for now… but I’ve recently returned from the International Pulmonary Hypertension Conference in Orange County, CA, and I really aught to update on that too… which means I’ll have to find another time I really want to procrastinate. 🙂 Until then… I think I’ll go for a walk.

Permalink 2 Comments

MRI Mishaps and Malarky

June 15, 2010 at 12:50 pm (Uncategorized)

First, let me just say I am grateful for modern medicine. As much as I hate to be subjected to it, I am here (at least in part) because of it. That being said…

It was another adventure in the wonders of a state hospital this morning. Today was my Cardiac MRI, a not all that commonly done procedure to track how my PH is treating me. Traditionally, they’ve been using Echocardiograms and Right Heart Catheters (RHC) with the disease. Both have their respective benefits and drawbacks, and now this MRI is more accurate than an Echo and less invasive (although maybe not as telling in some ways) as a RHC.

Anywho… I arrived 10 minutes early only to be told they were running late. Since this same procedure ran two hours late last year, I was prepared with a book and my new iPhone toy. However, being the dutiful patient I am, I read the sign encouraging me to use the Ladies room before the procedure and endeavored to do so. In order to do this, I had to be let into the lab, just enough to catch a glimpse of the convict on the MRI table and his security guard from the prison standing watch.

Wait… I’m early and am going to be made late by this guy running late from prison? Seriously? Don’t get me wrong, I’m enough of a humanitarian to be okay with health care for all (and this post isn’t about that) but I’ve got things to do, places to go! Come on, now!

Okay, so I wait out my time and go in to get started. I am informed of the procedures they are going to do, which are wrong. Yup, wrong. I don’t even know what exactly it is they are going to do and I still know they’re wrong. They wanted to subject me to intravenous dye I did not need for a test that was not ordered by my doctor.

“Oh, there seems to be some confusion…” says the tech. (Ya think?)

“Right. Well, it’s Tuesday, so my nurse is in. Call her. Your papers are wrong.” was my reply.

They were wrong, I was right, we proceed with the test.

I change into the high fashion hospital gown, although for this test I am allowed the dignity of my top (no bra) and bottoms, jeans today for me (this gets important later). Better yet, I even get to keep on my shoes. If you’ve read my previous posts, you know why this is important to me. Also, hospital floors are gross.

Into the tube I go. Thankfully I am not terribly claustrophobic, although for those of you who have not experienced such a test, let me just tell you that you lay on this table too narrow for humans (and I’m kind of a smallish medium girl, I don’t know how the big guy from the big house fit on it before me!). Hooked to a variety of monitors, you are slid into the tube, with about a six inch clearance to your face, and given a “Holy Shit, I’m Panicking, Get Me Outta Here” ball, technically called a “squeeze ball” which is your primary connection to the outside world for the next 30 – 45 minutes.  No big deal, actually, when you consider some of the other fun tests that are possible.

I lay in the tube listening to the beeps and whirs of the machine, muffled some by the headphones through which they pipe music to distract you. We begin the test, the first half of which is fairly uneventful. Then the voice of the tech comes to me through the machine…

Tech: “Is there a metal button on your jeans?”

Me: “Yesss…”

Tech: “They seem to be in the way. Do you think you can shimmy out of them down to your knees?”

Me” “Ummm… yes…”

Wait, I’m in the plastic equivalent of a connoli shell. Remember the six inches above my face? It’s also above the rest of me… and you want me to shimmy??? Well, I did it somehow, and we move on.

A majority of this test involves big breaths in, big breaths out, and then holding it just longer than is humanly possible or comfortable, but you do it anyway, and you do it on cue.

As this is going on, the music continues to pipe through my headphones. The soundtrack to my adventure? “No Air”. For those of you who struggle for your breath with PH, you get the irony. For those of you without, plug your nose for a while and breathe through a straw. It’s a pretty accurate simulation of the feeling. Then, play the lyrics over and over in your head. “No air… no air… how am I supposed to breathe with no air?”

Good times all around. The test is done, no harm done. Results in a week. Despite the relatively benign events, this is still a stressful morning. How do I deal? Like any good patient… I took myself shopping for a friend’s birthday at Crate and Barrel and then out to lunch, including a glass of wine. It’s not all bad!

I sign off with my same message from last time. I feel great. I really do. I defy the odds, and am deeply grateful and awestruck by that. But until my phriends stop suffering, until I can wake up and not think about the oxygen tube in my nose or the list of meds I need to take and when, until prognosis is no longer on my mind, it will not be enough. The hope and faith in a cure continues.

Permalink 2 Comments

Outdated updates

May 23, 2010 at 8:57 pm (Uncategorized)

I’ve had the gnawing thought in the back of my mind that I really aught to update this blog. It appears people are actually still reading it (hello!) and it has been sorely neglected since February (eek!), and my last post wasn’t exactly me as my usual cheery self. Score one for PH.

Well, I’m back, and PH has had its moment, so let’s turn the tables, shall we?

The truth is, I haven’t updated in part because I feel freaking fantastic. Or is it PHreaking PHantastic? Whatever! I started Tyvaso and, as usual, the anticipation was much much worse than the reality. In fact, there’s something rather wonderful going on.

I’m walking actual miles. I’m working out, planting gardens, painting walls. Wait… this is the life I actually remember before getting sick. All of it. It really is. I haven’t had a symptom in months (okay, a bit of chest pain, but let’s not talk about that). On my last six minute walk I surpassed the expected distance for a healthy person, and certainly beat my own previous record by a nice couple of laps.

But it gets better… I’m sure Tyvaso has something, a lot of somethings, to do with all this. But, I’ve also been seeing a naturapath and she’s pretty amazing. She started working on my inflammation levels, which previously were at numbers no one had really seen before… probably thanks to an autoimmune disease which is probably causing or aggravating the PH. There are a lot of probablies in this field of medicine! Well, those numbers, and all my bad numbers in blood work, are drastically better. And I can feel it!

That’s all the good, very very very good, news. The bad news, or same old news, is that as far as we know, my heart still looks and functions like crap. And that scares the doctors (you can see it in their eyes) and so it still scares me. So, I go in for another Cardiac MRI in a few weeks. Here’s hoping that something, anything starts to look better inside. Because as nice as it is to feel this great, that could all change in quite literally a heartbeat if something doesn’t get better. And I am acutely aware of that every day.

The other thing is, most of my PH friends still suffer a lot. More than any of us, myself included, can fully imagine. I’ve lost several phriends in these past months. Many of them got something else and PH made it impossible to survive. Most of them were around my age. I’ve found this to be an occupational hazard of connecting to the community of people who understand what I go through and live what I live (and so much more). People die. A lot. And until that changes, even if I continue to do well, I’ll still be here making a huge stink about causes and cures and hope.

The international PH conference is just a few weeks away! I’ll be speaking on a patient panel and hosting a get-together for the support group I co-lead online. Here’s hoping there is some fantastic news in breakthroughs and emerging research that will keep us all going.

Permalink Leave a Comment


February 5, 2010 at 3:32 pm (Uncategorized)

At PHA  they have a section called “Journeys” (http://www.phassociation.org/Page.aspx?pid=500). It is a place where patients, families, and caregivers tell their stories. I’ve always found the name to be quite fitting. After all, from the second you get your diagnosis it is a life-long (and life-changing) journey. We all travel it differently, but in other ways end up in very much the same place… hospitals, doctors, tests, more tests, medication, and more and more medication.

Well, the next step in my journey is here, and (surprise, surprise) it was the result of a one-day stint in the hospital, a very busy but very attentive doctor, a crappy test (see former posts on Right Heart Catheters), and now… more medication.

The time has come for the next step – where PH inevitably seems to lead – what we’ve been doing isn’t working as well as we might hope, so let’s try something new, something more. I am about to embark into the world of Tyvaso – an inhaled medication taken 3 to 4 times a day. We’re adding this to my other therapies, currently all pills, bringing the grand total of medications up to somewhere in the $200,000 per year mark and a total of nine doses of therapy a day. Oh, how my insurance company must love me!!

Tyvaso is new to the market as of this past September, and I’ll be the first in my clinic to go on it. In some ways it isn’t such a big deal. An inhaled medication is easier than a continuous IV one in many ways. And the number of treatments and time it takes for each treatment is about half that of an older inhaled med that is available. I’ve been feeling like crap for the last month, signs of PH I never had cropping up at the most inconvenient times (all times to feel your PH are inconvenient). So, I know it is time, and I’m pretty much at peace with that.

Yet, I just spent about a week being pretty messed up about all this – it is very hard to accept that PH is doing just what they say it will. Then I feel like some sort of hypocrite because I preach the positive all the time… but I’m still scared silly sometimes. And really angry, and really confused.  It reminds me of Hebrew Block Logic – a decidedly non-Western way of thinking. This was a concept I was introduced to in college that has always stuck with me. My professor, Dr. Marv Wilson, put it this way:

“Concepts were expressed in self-contained units or blocks of thought. These blocks did not necessarily fit together in any obviously rational or harmonious pattern, particularly when one block represented the human perspective on truth and the other represented the divine. This way of thinking created a propensity for paradox, antimony, or apparent contradiction, as one block stood in tension — and often illogical relation — to the other. Hence, polarity of thought or dialectic often characterized block logic….Consideration of certain forms of block logic may give one the impression that divine sovereignty and human responsibility were incompatible. The Hebrews, however, sense no violation of their freedom as they accomplish God’s purposes”

He later goes on to call this whole thing a “dynamic tension“. How fitting.

Miraculously, I found this quote online when trying to find a source for Block Logic – and it just fits so darn perfectly! Never mind the source – I know nothing about it or anything else they say, but I’ll post it here in effort to be a responsible writer and so I don’t have to go digging through dusty boxes for the actual text – which all these years later still hangs in the back of my mind. Good to know my education stuck!: http://theologylog.8.forumer.com/a/hebrew-block-logic_post8.html

So… I’ll tap into my Jewish roots here. I can be 100% full of faith in a cure and 100% human in how I feel about the whole danged thing happening to me. My human responsibility is to move forward with the treatments I need while I wait for the divine sovereignty of a cure. Okay. That works. This past week I found myself asking for “the peace that surpasses understanding” (Philippians 4:7) and I think I just found it.

By the way – speaking of Journeys – have you heard about the big one in the PH world yet? Please check it out and support me while I support the cause: http://www.firstgiving.com/colleenbrunetti

Permalink Leave a Comment

Sometimes someone else says it better…

January 28, 2010 at 10:46 am (Uncategorized)

Walk with me…..
Walk in my shoes
for one single day.
Then you’ll see why
I need to pray.
Come live in my home
for a week or two
and then remember
I am just like you.
I didn’t ask for the things I was given
I didn’t choose this road I have taken
Walk a mile with me hand in hand
Then perhaps you will understand.

I’m not really complaining
about the stress in my life,
I know that we all have
some toil and some strife.
But walk with me, when you think
I am wrong, walk with me
and you’ll start to belong.
Embrace my sorrows,
like they are your own,
And then you will know me
And see I have grown.

The journey I take
is different from yours
My life took one of those
unexpected detours,
But this road that I travel
is not really so long,
If the people who watch me
will join in my song.
Listen to my footsteps
and watch how I dance
And then you will know me
and give me a chance.

Take heart and remember
It can happen to you,
who knows where my pathway
will cross over to you?
So speak to me softly
if you can’t understand
Remember I once stood
right there where you stand.
And walk with me gently
when the day is at end.
And then I will know
I can call you my friend.

copyright 1999
Sally Meyer

Permalink Leave a Comment

To Subscribe

January 19, 2010 at 4:52 pm (Uncategorized)

It seems a bit complicated to subscribe to blogs here… the best I can tell, unless you want to join WordPress and be a blogger yourself, you need to scroll down to the end of one of my posts and leave a comment. At that time you can also check a box to be e-mailed updates.

I don’t intend to write all that often, but every now and then I have something big to share or something new to say – I would love it if you would follow my journey.


Permalink Leave a Comment

Next page »