Friday, January 25, 2013
Timey Wimey
I decided I am not going to apologize for not writing more, because then I will be apologizing every post! Haha, so when I'm up for writing, I'll write.
So, I have been on the transplant waiting list a year now. I think hitting this "one year" milestone has really messed with my head. I don't really like life on dialysis right now. The newness has worn off. I haven't gotten used to the uncomfortably-full feeling I get every night. My dialysis nurses said I would, but six months later, it hasn't happened yet. I am also a little on the petite side, so that much fluid in me is really too much, and not fun at all.
I know I shouldn't hope too much, but I couldn't help myself. First, I was hoping to have a transplant before I had to start dialysis. Then after I started dialysis, I hoped that the transplant would come soon afterward. I feel like I am out of hope now. I have braced myself for the long haul, and if a transplant comes sooner, then I'll be pleasantly surprised. Well, at least every day I am working my way little by little to the front of the list.
I have been pretty positive throughout this whole disease, but BAM, all of a sudden I see the one year date and I feel like my spirit is broken. I know I shouldn't let it affect me like this, but dialysis is hard. I don't feel well. I have little energy for the day-to-day stuff. I haven't really paid attention to my appearance for a long time now, and all of a sudden I really don't like what is looking back at me in the mirror. I am gaining weight from the dialysis fluid and not being active. Because of this, I am the Queen of Stretchy Pants, but you can just call me the Queen for short. I have no muscle tone anymore. Just holding my arms in the position to type at my desk makes my arms feel so fatigued. *in my Queen voice* "Carry On!"
I think this is just a phase, this funk I'm in. I am praying for this to pass. And I am trying so hard to not let anyone see that I am crying on the inside. But I'll get past this, I know I will. My kids need me. No matter how bad I feel and how much I look forward to bedtime (my bedtime), when I hear Hayden ask me "Mommy, will you snuggle with me?" my heart melts and I will not let wild horses (or my bedtime) drag me away from our nightly snuggle time. I get into bed with him and we talk about our day. And we always pick our dreams for the night together so that we will be in the same dreams at the same time (his idea). Hayden reaches his hands up in the air and grabs the dreams that he wants, then he puts the dreams into his head (through his ear. And he keeps his other hand on the other ear so the dreams don't "fall right out." Of course!) He makes me catch my dreams too, but sometimes he notices that I don't catch the right ones, so I have to throw it back and wait for it to come back around and catch it again. His favorite dreams usually include police cars and rescue vehicles and Doctor Who. God, I love that boy!
Anyways, I think I am allowed a little bit of woe-is-me on this first anniversary of being listed on the transplant waiting list. I hope there isn't a second year anniversary. See.... there I go hoping again. :) I'll be just fine.
P.S. Bonus to anyone who understands the title ;)
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Jennifer, I understand you "a lot". Your feelings of frustration and disappointment are so appropriate. I would give anything if I could help you out - but I gave my baby brother one kidney, and that's all I can do. I will however, continue to encourage all healthy adults to consider donation. If you ever need me to talk to a possible canidate, I would be happy to do so. I am just as healthy now as I was 5 years ago, before the donation, and I was 55 at the time! I don't know what people are so afraid of. For me, it was the most wonderful gift - to give myself. Yes, for ME. I never married or had kids. I have spent my career taking care of women and delivering their babies. I never had the opportunity to feel the joy of giving life as most women do - until I gave my brother the kidney. THEN I was able to appreciate what it is like to share in that life giving experience.
ReplyDeleteI won't tell you to keep your chin up, or any of that stuff. You will have good days and bad. Just never give up hope. Somewhere out there, there IS a kidney with your name on it. I just hope it comes to you sooner, rather than later.
All of my best wishes to you.
Betsy Edmondson, CNM
Thank you, Betsy! Your words are so encouraging. Sometimes I just can't keep the smile going and the tears win out. And I know from experience that I usually feel better after a good cry. I know I really can't stop hoping because every time the phone rings, the first thing I think of is "Is this THE call?"
ReplyDeleteI have so many blessings to be thankful for, and I need to point out an example. Since I didn't mention Celena in my post, I'll tell you what she came home from school with: Today was the day her class went to the school book fair. I gave her money to buy a book. She bought one for herself and one for Hayden (who had already been to the book fair and got himself a book). She told me there was a book she really really wanted, but she chose to get Hayden a book instead because she said the book "was perfect for him." (It was a Lego story book). She had enough money to get herself two books, but gave up one that she liked to give Hayden a book. And this is not the first time she has done something like this. She always thinks of others before herself.
I am so blessed to have a perfect little family. My husband loves me insanely. No, really. I think he is insane. Haha No, I am teasing. I know he loves me very much. I will focus on what I have rather than what I don't have, but every once in a while I'll let myself vent. Thank you all for listening and giving me your shoulder to cry on (in a virtual way...)
:)
xoxo
Jenny
We think of you and your family often. Our Hayden and Haydn were such good friends at DP. You will beat this! -The Bordelons
ReplyDeleteI think I have posted before...but even so, I just want to tell you it is ok to have good days and bad days. But just like some of the previous posts...never EVER lose hope. My father in law was on the kidney transplant list and dialysis for eight years. And at his age he truly had accepted that it just wasn't going to happen. And then out of the blue, he got a call. The only problem was that he had another health issue going on at the time and he had to decline. After that, he REALLY felt sure that his chance had come and gone. But miracle of all miracles, almost a year to the day, at 9:00 on a Wednesday morning, the phone rang and it was "the call". And there began our journey of becoming a transplant recipient. And though the course of the journey changes, it's still hard even after the transplant. But, ultimately, it all happened in the time and place it was meant to happen. I hope this story gives you the hope on the days that you just can't seem to muster it up on your own. Keep loving those babies and use them as your drive to keep forging ahead. I have been and will continue to keep you in my prayers that your call will come soon and that your time will have arrived!
ReplyDeleteHugs to you
Lisa Saxe
Spring Hill TN
could you please email me with info about how to get tested to see if I were a match?
ReplyDeletePeace and love,
Carie Bowman
cariebowman@yahoo.com
Thank you Lisa for sharing your story. Even though some days are hard, I will try my best to not lose faith and hope. A lot has happened in the past year. Many changes. Big changes. Sometimes I stop and wonder How did I get here? This isn't the life I imagined!
ReplyDeleteBut then I receive a kind word from my friends and family who lift me back up.
When I write from the heart, I am not looking for pity or handouts. But the blessings come pouring in. I have been blessed with new friends who don't even know me, yet they reach out to me and give me support and hope. I have been blessed with friends, new and old, who provide a meal for my family. I have been blessed with friends, new and old, who are not afraid to ask me how I'm doing. Some even offer the lifesaving gift to be tested to donate a kidney to me. Wow.
Above all, I have my faith in God that He will watch out for me and my family. Sometimes it is hard to remember that, but then I get by with a little help from my friends. :)
Carie Bowman - Thank you for your message. You are an inspiration and a perfect example of what gives me hope that I will overcome this! I will send you a message via e-mail.
--Jenny
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