This $^*# is Hard


It was confirmed via phone call from my doctor last week that I am not currently eligible for the life-saving surgery in San Diego. In fact, I’m so not eligible for it, that my doctors didn’t even mention it to me. I’m the one who found it online and we asked them about it. They confirmed that my doctor knows those doctors by first name, and if I were stable, and didn’t have co-morbidities, they might refer me, and perhaps I can become eligible at a later date, but right now, the answer is no. And even if they can send me to San Diego later, there’s no guarantee then I’ll be eligible for the surgery, depending on where the clots are in the pulmonary artery and the lungs.

That’s like telling someone, We’re sorry, but you’re just going to have to die now.

But that’s not what I heard.

It sucks I’m not eligible. So I went on an online quest to find out information about people with CTEPH who aren’t eligible for surgery. I went to the PHA’s website and went into the forum and did a search for CTEPH and found like nine threads total. That’s it. Nine threads. Of those nine threads, there was only one single person who had CTEPH who had not had the surgery or was not awaiting eligibility determination. The thread in which that woman posted, she was talking about what her options were now that she was determined ineligible for the surgery and one of the other people answered, “…get used to living with a terminal illness.”

Wow. That’s supportive.

That woman hasn’t posted since then. That was about a year ago. So I guess finding online support for CTEPH directly isn’t likely to happen.

So I realized, okay, so I can’t find any long-term survivors with CTEPH posting online or in support groups. So I can’t find anyone sharing their experience. I can’t find anyone who has beaten the statistics, beaten the odds. The stats are dismal.

My mother says I’m in denial. I finally called her back and asked her what she meant by that. She said she thought I wasn’t being honest with them about how bad my medical stuff really was. I said, “Well, that doesn’t mean *I* am in denial.” I told her that anyone who reads my blogs knows how serious it is, I mean, it’s not like I haven’t been writing about it. She said I tried to paint an optimistic picture of it, that she knows my medical stuff is serious, and I said that being optimistic, isn’t that what you’re supposed to do? And that being optimistic doesn’t mean being in denial, right?

But the statistics say that something like 97-98% of all people with CTEPH who are left untreated die within two years of diagnosis. I’m at year one–as of this month, it’s been one year since diagnosis. But, but, but… I’ve received treatment, and I was diagnosed much, much earlier than most people are. I survived the unsurvivable when I survived those massive multiple bilateral pulmonary embolisms–and that means that they caught the CTEPH almost immediately upon it happening, and I got treatment within about six months of the very first onset of symptoms. That has to count for something, right?

But even with treatment, I can’t find anyone who has lived more than 10 years with this. I can’t even find anyone who has lived more than five years with it.

How scary is that?

But then my doctor talks to me about stuff he wants to try, “…in a couple of years…” does that mean he thinks I’m going to be around in a couple of years to try it? I sure hope so. Is he just being optimistic? I think he is being optimistic, but not ‘just’. So I think as long as I stay as healthy as I can, I’ve got some time.

That’s where my head was at, when I told my mom that there was a surgery they recommended for me, but that I wanted to try to treat this problem myself, and my mother said, “But maybe they think you’re running out of time.”

Out of time.

Out of time.

Out of time.

I can’t talk about being sick without my daughter breaking down and bawling and acting crazy.

I can’t talk to Mr. Michy about being sick at all–he doesn’t deal well; he gets angry, and I get sensitive, and so that’s not good. And I don’t blame him. I don’t. But sometimes I miss being able to ‘talk to him about anything’, something that we always had–and now, we don’t have that, even if it’s just about health stuff.

Buffy has taken up so much slack, I know it’s weighing on her, but she never misses a single doctor’s appointment with me, never misses a single moment of the times I need her strength–God, what would I do without her right now?

Every sniffle, sneeze, cold, upset stomach, yawn, stretch, ache, pain, spasm, you-name-it, becomes bigger than it has to be.

I get angry. I get sad. I get numb. I get tired.

I get sooo, so, so, so, so tired.

I feel like I’ve got the rest of my life ahead of me…. and then I stop and say, Whoa… the meaning of that sure has changed.

And you know something? I don’t want to die. I’m not afraid to die, but I’m not ready and I don’t want to. Not just yet. Nope, still too much to do.

So what if I’m optimistic, as long as it doesn’t stop me from doing what needs to be done? So what if I try to look at the numbers and think that they ARE just numbers?

I’m okay with that.

And it’s not denial.

And so what if I can’t find anyone online talking about CTEPH who has survived more than five years without the surgery?

I’m just going to have to live long enough to become THAT person… that person WILL exist, and she will be me. And maybe *I* can give hope to someone else who is or will be like me, searching around the internet, hour after hour, day after day, looking for just that one person–that one person–to give hope for the future. I can’t find that person for me right now, but I am optimistic and certain and hopeful I am going to be that person for someone else.

Plus, there are too many books to write… and as a line in one of my favorite sad songs says, “Who could ever walk away at Chapter 21…?”

Love and stuff,

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12 Responses to “This $^*# is Hard”

  1. Lyn Lomasi says:

    You WILL be that person. I have always admired your strength and you sure are being forced to be strong right now. The universe doesn’t hand us things we can’t handle. Just keep being you. Being optimistic is a good thing.

  2. Kathy says:

    I am lousy about commenting on blogs but even more than that lately I am still just in a fog about your whole situation and wondering how you manage to face things with such grace. I don’t know what to say other than this sucks and I hope something changes. I agree with Lyn though, there is no doubt in my mind you will be the one that does show the world how you live with it if you cannot have the surgery. Maybe you build a board or a Facebook page and maybe someone else who is facing the same will be able to find you. You are an inspiration to so many already and I know anyone with CTEPH will find the same guidance, support, and advice from you that so many writers have.

  3. Lee Woodard says:

    I’m sure you are absolutely write about being optimistic even while being realistic. You are smart enough to know that what goes on in your head and your heart affects everything else about you.

    It sucks that you can’t talk to Mr.Michy, but hopefully that will change with time.

    Keep on being you, and those of us who care about you will continue sending prayers and positive energy your way.

  4. John Morrison says:

    It’s easy for some to confuse adamant hope with denial. I think your words reek with the kind of hope that represents the unseen “substance of things hoped for”.

  5. I believe in you. You WILL be that person.

  6. cathy says:

    They say everything happens for a reason, and you learn more from the bad experiences than the good ones…. I guess the first thing illness taught me was it affects everyone around you. I know what you mean about how people respond when you try to explain. I had a hard time dealing with that. It was tough to step into their shoes and think about how I would respond if this was happening to someone else. How would I feel? What would I say? I’m horrible about knowing the right thing to say… Some people are far too emotional, others are in denial. Very few can accept and support exactly the way you need. And it’s hard to find those people when there is nobody out there dealing with what you have. Your friends and family are only able to see from the outside looking in, and they have their own anger, sorrow and fears separate from your own. You will find, if you think about their responses and actions, that this tells you how they feel about you, what your place really is in their lives. And I hope this new, deeper understanding serves you well. Carry on as you are… you are one of the strongest women I know, and you are doing and will keep doing what you know is best.

  7. Kevin says:

    Believe in yourself because nobody else can play your role better than you. The universe is balanced for everyone.

  8. Benjamin Fowler says:

    Hey Michy, I have been diagnosed with cteph and just had my appointment with my docs at Duke medical center in Durham, NC on 10/8/2012 to see if im eligible for the surgery. I dont know much about whats going on and its hard to try and live life restricted. I cant play with my kids like I want to. I have been out of work for 18 months, been denied twice for my disability. It sucks!! Finally received medicaid but it only back dated so far and im already up to my eyeballs in debt. If you know of a way or some sites I can look at online or something, I would greatly appreciate it

  9. I did a search. They are doing Clinical Trials here: http://medicine.uab.edu/dom/pulmonary/82588/
    PLEASE look into it!
    I am praying to the Universe that you WILL OVERCOME!!!
    I KNOW this IS hard. I don’t know where I am going to end up. I have Stiff Person Syndrome that causes your muscles to go rigid/stiff, then spasm out of control. It has messed with my eyes giving me double vision, and now a permanent black spot in my field of vision. It has me crippled with spasms. I cannot wear a bra because I feel as if I have a belt wrapped around my rib cage that gets pulled tighter and tighter as the day goes on. The ONLY time I wear a bra is to the Dr’s office. The ONLY time I go out is to the Dr’s office, as you said in your article today, 10-9, it’s a pain to go anywhere. The world is NOT made for us in wheelchairs.
    I believe you are searching SOOOOO hard, you WILL find a surgery to help you! Keep pushing on! Keep bothering doctors. The LOUDER the squeaky wheel is the more apt it is to get greased!!!
    Keep going for it!
    I LOVE your attitude! Use it to your advantage, I know you are!
    HOPING that article can help? If MANY of us search, and on all the different search engines at different times, someone will find something!
    laurieisreading at gmail dot com
    Please email me when you get in for that surgery!!!!
    With love,
    Laurie Carlson

  10. I bought ALL your books to help support you, and put it on Facebook and Tweeted it! I’ll also post reviews on my blog!
    Just give me a little time to read and write the reviews!

  11. http://www.sgph.ch/CTEPH?language=de
    Support group: plus article with good info http://slickdeals.net/f/4909504-Upcoming-Nationwide-Telephone-Interview-CTEPH-PAH-Health-Conditions-Study-75
    Well, I did a search of CTEPH 2012 and those were a few things I came up with. HOPING they help?????

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