Life is funny. And though I should be quite used to its ups and downs, and its unexpected turns, I never seem to be less surprised when one day things are down, and the next they are up. I should be better suited for such such a life. But I'm not.
The sun has been out here in Toronto, and the temperature has been hovering in the 15 degree zone, and people are out and about loving it. Some people loving it a bit too much, as I saw a girl in a skirt and t-shirt today freezing her butt off - but over all it has had a great affect on the mood of Torontonians. We are so sick of winter by March, and it shows - hence the girl with the bare legs today. I am no exception. Today Scarlett and I took a long walk. We sat at Starbucks and soaked up the sun. We drank tea, watched people with their babies and dogs, and even ate a chocolate covered caramel pretzel stick that has made its way back onto the Starbucks menu. Thank you Starbucks!! It was amazing, and Scarlett had a great long happy nap, as I relaxed and oozed happiness.
Besides being lazy at Starbucks, I have been working out at our club. It's been so great to be back there, getting a great workout in, and being among people again. I have a program that a trainer has put together for me. It's great. Today especially I felt so strong, like something has changed, like finally my body has freed itself from the aches and pains of tx and is able to gain strength. I was looking in the mirror today as I was working out, and I could not help but think of where I was 3 months ago. Even a month ago. How my body is changing and muscles are growing back. I feel strong. When was the last time I felt like this, high school perhaps. I walk with my shoulders back, taking in lots of air into my lungs. God I am happy to be alive today. Happy to have this body that is responding to my demands for it to get better and stronger. With each work out I feel less anxiety about rejection, about infection, about something going wrong. Since it's not. It has not since. Positive energy in running through my veins today.
Since the biopsy results came back negative for rejection, infection, or fungus growth of any sort, I have had my prednisone lowered by 5mg. I am also able to stop the blood thinners in 10 days when I get my filter removed. The filter and this blood clot that I had 4 months ago has been such a pain, that I am thrilled to have that chapter of my life closed. I saw the Thrombosis doctor this week, and the ultrasound showed no blood clots, and that's what we wanted to see. I don't think anyone expected for it to still be there, but who knows how long these things can drag on. I am just happy it's over. So much of this extra stuff that I have been dreading is coming to an end. It's amazing how things change in 3 months.
So what now? Do I keep the blog? Do I keep writing? I don't know. I have committed myself to writing a book. It has always been something that I have desperately wanted to do. To accomplish. I have lots to say, and always thought that I would want to get it down on paper after I had my transplant. Well, the time has come. I have started to write, and it has taken me away from the blog. I simply don't have enough energy for both. I find writing tiring, but rewarding, often exhilarating. Sometimes I can't stop. At the same time I don't want to make my blog something that I never wanted it to be. About what I had for dinner, and what Scarlett did today. Not that there's anything wrong with that, it's just not me. It's not what I wanted to say here. I guess time will tell.
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My New Treatment: O to the 2
9 years ago
19 comments:
It sounds to me like you need a new blog OR I need you to add me as a FB friend. I can't imagine not hearing how you're doing and how Scarlett is doing. I WANT to know what you had for breakfast and how grown up your baby is becoming.
Alas, I may just have to continue to stalk your brother's blog to find out how the girls are doing.
I also think everyone that blogs for a purpose wonders what to do with the blog once the 'conclusion' has come. Do I continue, do I stop, do I start a new blog? Everyone has a different answer and I will accept whichever fate you choose, although I may cry for a few days!
I know I don't comment much, but I read every single entry!
suggestion: photo blog? You could just do a few sentences for your loyal followers and a pic or two every so often that describes life at the moment... still maybe not you but definetly a good alternative to getting trapped into saying stuff you didnt intend to say
p.s. as always you make me really excited for post tx bodily feeling.. :) "highschool maybe?" wow!
Cyn - I don't want to make you cry!! I know I have many people that read and I hate to just cut everyone off! I get it. I follow a few blogs that way and don't know what I would do if those people stopped writing!
LittleM - You should be excited! And good idea about the photo blog. I don't know what I will do, we'll see.
I for one would miss you posting on this blog, but I also totally understand if your life and healthy, strong body are taking you in another direction. If you do stop the blog - thank you for sharing yourself so intimately with so many total strangers and for highlighting the importance of organ donation and talking to people about this subject.
Whichever direction you are headed and whether or not this blog will be a part of it, it has been inspiring to read and learn from. Thanks so much for being so candid and sharing your journey.
You are such a role model to your community Nat. Whether it's a book or a blog - don't ever stop reaching out to touch others lives. Being one of yout original readers, I have to err on borderline sappy an tell you how very proud I am of you. You have achieved your dreams with grace in incredible struggle. It's time to enjoy ever single momment.
Do what makes your heart happy! You deserve to just be and enjoy and pursue your passions. Whatever your path may be, I'm sure we will all touch base with you again. Hugs
Please continue to touch base with us once in a while in some way. I too can't imagine not knowing how you and Scarlett are doing. You are one of the most strong and inspirational women that I know (kind of, without ever meeting you) and you have made me look at my life differently.
I am so happy that things are going so well for you. You deserve it. It brought tears to my eyes to picture you and Scarlett basking in the sun. You have come so far.
Dear Natalia -- you have the baby, you have your lungs, thank goodness your lifetime journey continues! :D
Whatever you decide to do with your life, this blog, your book, keep reminding yourself that it is YOUR life. You fought all the odds and endured, and are entitled to do whatever feels best for you at this wonderful new stage in your existence. You have inspired, and really ramped up the awareness for organ donation (along with Eva), and whatever you need your life to be at this moment is what you should be doing. You fought sooooo hard for these moments, do with them whatever feels right for you!!
♥
Hi Natalia,
By way of introduction, I’m an author (you can see what I do on alexandercampion.com) with so-called end-stage emphysema (17% FEV1) and am treated at TGH. Two years ago I did the run-up for the transplant but it was decided that I was a baby step on the right side of the borderline and so I’ve been on hold every since. Amazingly my FEV has actually improved over the period (all the way up from .54 liter to .56 liter!). Anyhow, the general consensus is that this is the year for me as I’m finally beginning to deteriorate again.
Your blog has been very important to me. Not just because of your courage and fortitude but because you bring so much factual information to what is a very daunting procedure for the uninitiated. In fact, you completely cured my ambivalence about the operation and have motivated me to proceed aggressively.
I strongly urge you to write your book. You have a definitude flair for communication and tell your story in a very vital and immediate way. You will write a wonderful book that will be important to very many people.
I also urge you to continue your blog. The writing cycle is a very long one. My first book was finished three years ago and will only be out on June 29th of this year (I’ve just finished the third one). You have a large constituency who has grown attached to you and who have a vested interest in your well-being and happiness. Walking away from them for so long would make most of them very sad.
Almost all writers need to occasionally write something other than their work in progress. Most of us keep a journal of some sort which is an indispensible outlet for stuff that can’t go into the WIP. Even though your book will be along the same lines as your blog I think you will find that two or three blog entries a month will be a welcome and needed distraction and, of course, will mean a great deal to your readers.
If I can help you in any way with your writing (agents, breaking into the American market, and all that stuff), I’d be more than happy to. After all we share an alma mater.
All the best,
Alexander Campion
hey, nat. don't let anything hold you back from what you want to do.
WOW Nat, I never expected you to consider closing the blog....(inserting whine here). I have followed your story since the very very beginning, when you were trying and I was newly pregnant and well, I can't imagine not ever hearing from you, how your doing, how S is doing.
I like the idea of a photo blog...or you could turn it into a milestones blog for S when she gets older...
I think you writing a book would be a great idea, I think you could share alot and touch even a larger audience. But I'd hate to see your blog go........
Whatever you decide I know it will be best for you, and I so hope that all your dreams continue to be met and your spirits lifted!
go sis go. you will keep blogging, you will miss it.
I just saw this link, and I thought that it could be something neat for you to do for Scarlett for when she is older
http://blogspot.sharedbook.com/blog2print/googleblogger/index.html
It is all about putting your blog into a book :)
Hi Natalia,
Our paths only crossed briefly in the treadmill room. I have been on the tx list with IPF for quite a while. I remember hearing you tell your story and being amazed about how straight forward you are and I admire your "let's get her done" attitude. I want to thank you for being a blogger. You may not know it but people have benefited from what you have written.
Your blogging will change, your life has changed but share what you can and know that those of us who wait or are transplanted can benefit from those who go before us. One day I will have the strength to read all the blogs around your operation, but I really appreciated reading how you were doing once you were home and your take on staying healthy.
You do have the most beautiful daughter, and as a mother of two sons, all I can say is continue doing what you are doing - live life.
Thank you,
Sandi
Natalia, I love reading your blog. I somehow feel connected to you since I had a difficult time after my daughter Leia was born. I also feel good knowing your are getting better and better each day and enjoying life more and more. Your love of life and positive attitude is refreshing. It is very inspiring. Also, you have a way with words and are a great writer. You have a gift, and a huge audience! Don't stop writing, maybe write once a week or less. But let us know how you're doing and how Scar is growing. This could turn into a site about being a new mom, and dealing with all the stuff that comes with it. I would miss you :) and your brother would get tired of giving me updates every time we talk!!!!! Lillian Campea
Deareset Nat,
I will miss your blog when/if you decide to end it, but you have a wonderful life to lead now that takes you away from the computer and puts you into the real everyday living, laughing loveing and motherhood. BTW... I would love to read this new book you have started.
Since I started reading your blog, and talking with you at FB, you have really alleviated many of my worries about tx surgery and I too know that I am strong enough. You share with people what most are afraid will scare someone, and you do it with such grace.
You are strong now, beautiful, and have been awarded the chance at a life that many people with CF to not get to have. We all love you here and hope you succeed in everything you do!
Please KIT with all your FB buddies... :) I just love to see pics of you and Scarlett. They really give me hope for a better future for myself.
Thanks for everything ~Angie James
I say "Ditto" to Cyn's remarks. If you would Facebook me, I am Linda Johnson Crane.
Linda in Louisiana
Mother of Mandy (with the angels) Kyle, Hunter and Brady wo/cf and Jamie, 24 yom w/cf
Life is always changing, leading us down one path and then down another. My blog has followed the changes in my life, switching directions whenever necessary. It's what keeps it from being boring and stagnant.
Yours has been much the same way for me as a reader. I've been a reader since the early days. The IVF days. The surrogacy days. The countdown to Scarlett days. The deterioration of your health days. The time of your hospitalization. Your transplant and recovery in the hospital. The early days once you went home. And now your life after transplant. I'd hate to think this is it, that after all that the plug will be pulled. I agree with John, I think you'd miss it. I know for sure we'd miss you.
Ultimately the decision is yours and you will do what works best for you. I think writing a book is a marvelous idea. I'd be one of the first to buy it. I just hope I get to read about the process :)
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