For those of you who know me personally, you know that I am making a Bar Mitzvah in the Fall. Very exciting stuff around here. Things are moving along swimmingly and then I just had a "random thought" what happens if I magically get a kidney donor. Well, you're probably think, "Are you a fucking idiot don't worry about the Mitzvah get your new kidney!!" Yes I know, when I really stop aand process things that's what I would do, without question. My son would read from the Torah as practiced regardless of what state I am in, but the festivities would be postponed, and now Im thinking that what better reason to delay a celebration. It would be like my Bat Mitzvah and wedding redux!! That could prove to be even more exciting. Sorry, rambling..
I warned, random thoughts: Did you know that when a child tells you (and I quote) " I am a difficult child to parent" you should run screaming! Yes my own son told me that the other day. I am pretty sure I should just give up now, because I will not live through his teenage years which are coming quick!
My kids are so different it is truly amazing. One is confident, outgoing, enjoys athletics, where the other is so entirely the opposite on every level. Yet they are both super smart, intuitive and down right cool. It is very interesting watching them succeed and fail, learn and grow. This has been an interesting year since I have been around so much, not working because of dialysis. This year and yes it is almost a year, has shaped our family in the so many different ways. It's hard to explain, but easy to imagine.
Oh by the way, it's been hot, as hot as it was last July and the July before that and so on, you get the point (LOL)
I love my dog more than life itself!! "I only like golden retrievers." I really do mean that. Penny makes me laugh and smile at least ten times a day.
Another thought, my husband and I watch "something stupid and funny" every night before bed. It is our policy, we stand by it 100%. You can't go to sleep after 4 episodes of Law&Order SVU! All you here all night is the "chunk, chunk" sound and dream of Elliot Stabler(oh, did I say that out loud!) Trust me watch a Goofy Comedy from the 80's(it's a category on Netflix) and you'll sleep like a baby!
Not to go all depressing on you, but I saw something at dialysis on Friday that I hope no one ever has to see. Let me start off by saying that there are some very sick and very old people on dialysis. Especially the time of day I go for treatment. But one of my section mates is not very old but has many other health problems, that make dialysis very difficult. Dialysis lowers your blood pressure so we are monitored very carefully in that area. But this man in my section, not well, his blood pressure dropped and then he had no pulse. They had a defibrillator ready. they bagged him and gave oxygen. I was 5 feet away. Everyone remained calm, they called 911 and thankfully he regained consciousness. It scares me to think that someone could die there. I have seen them rush to other patients who have passed out. It is another odd reality that I endure.
I hope I didn't bore you with my random thoughts. Please follow me and comment thoughtfully.
Sunday, July 21, 2013
Sunday, July 14, 2013
Keeping the Faith
I have always been the type of person that believed that everything happens for a reason. I do stand by that. A lot of people do not get behind that, but I do. You can probably now ask yourself, what reason can we give for disasters, sickness, pain, heartache and on and on. I can't answer that question but what I can say is that for every situation, good or bad that we are faced with, we come away with some lesson learned or some realization of what we could have done differently to effect the story. So again, I wonder what reason is it that I should have kidney disease and CML and have to be on dialysis and need a life saving surgery. Well, honestly I don't know that yet, but I do know that is my faith in goodness and my faith in my family, friends, my G-d and myself that keeps me going each and every day.
Keeping the faith isn't just a catchy song lyric, it's a test and a trial each day. When I get up in the morning and I realize I have to go to dialysis again, I say this sucks, why should I do this shit, but I dig a little deeper and a pray very hard to have the strength to get me through this day. And when I am tired and aggravated sitting in the chair watching the clock and the machines and the blood pressure monitor I grab onto my faith a little harder and watch another episode of Mad Men on Netflix. (On a side note, I don't know how people ever survived any kind of long term medical treatment without a tablet with Netflix and Amazon Prime , just sayin!) It is faith that keeps me sitting in that chair and it is faith that I will be better one day and faith that I am strong enough to deal with this.
As I mentioned before I believe things happen for a reason, well here is an example of this: And I will tell you, this JUST HAPPENED YESTERDAY!!! Here goes:
My favorite Aunt and Uncle and Cousins rented a vacation home out in the Hamptons and invited the rest of the family for a BBQ. We had a great afternoon, schmoozing, eating, drinking, relaxing, kids in the pool. Later on in the day 3 women stopped by, one of which was a colleague of my uncle's. They joined us for a drink and we were all chatting. One of the women was talking to my brother and mentioned something in a fleeting conversation about someone needing a Kidney. Well naturally I had to get in this conversation, I said, "I need a kidney, I am dialysis". She said her father recently had a transplant at the same hospital that I am going to have my eventual transplant at. OK no big deal, right? Well, she continued to tell me that she works at the transplant hospital in the POST transplant department, so that after my surgery and discharge I return to the hospital quite often and I am followed for 3 years by this team. She is one of the doctors that I am to see. In addition, my transplant coordinator is her boss. THIS MEETING WAS NOT A COINCIDENCE!. I believe that we were supposed to meet. I am still reeling from this "chance" encounter. Honestly, what are the odds that this random person, who has no connection to anyone but a colleague of my uncles' and came along for the ride meets me, someone who will now be connected to her for at least 3 years. It's hard to comprehend .
Is it my faith and strength that brought this to light? I am not sure, but what I do know is that I will continue to keep my faith and belief that I will be ok, because it is working so far.
Keeping the faith isn't just a catchy song lyric, it's a test and a trial each day. When I get up in the morning and I realize I have to go to dialysis again, I say this sucks, why should I do this shit, but I dig a little deeper and a pray very hard to have the strength to get me through this day. And when I am tired and aggravated sitting in the chair watching the clock and the machines and the blood pressure monitor I grab onto my faith a little harder and watch another episode of Mad Men on Netflix. (On a side note, I don't know how people ever survived any kind of long term medical treatment without a tablet with Netflix and Amazon Prime , just sayin!) It is faith that keeps me sitting in that chair and it is faith that I will be better one day and faith that I am strong enough to deal with this.
As I mentioned before I believe things happen for a reason, well here is an example of this: And I will tell you, this JUST HAPPENED YESTERDAY!!! Here goes:
My favorite Aunt and Uncle and Cousins rented a vacation home out in the Hamptons and invited the rest of the family for a BBQ. We had a great afternoon, schmoozing, eating, drinking, relaxing, kids in the pool. Later on in the day 3 women stopped by, one of which was a colleague of my uncle's. They joined us for a drink and we were all chatting. One of the women was talking to my brother and mentioned something in a fleeting conversation about someone needing a Kidney. Well naturally I had to get in this conversation, I said, "I need a kidney, I am dialysis". She said her father recently had a transplant at the same hospital that I am going to have my eventual transplant at. OK no big deal, right? Well, she continued to tell me that she works at the transplant hospital in the POST transplant department, so that after my surgery and discharge I return to the hospital quite often and I am followed for 3 years by this team. She is one of the doctors that I am to see. In addition, my transplant coordinator is her boss. THIS MEETING WAS NOT A COINCIDENCE!. I believe that we were supposed to meet. I am still reeling from this "chance" encounter. Honestly, what are the odds that this random person, who has no connection to anyone but a colleague of my uncles' and came along for the ride meets me, someone who will now be connected to her for at least 3 years. It's hard to comprehend .
Is it my faith and strength that brought this to light? I am not sure, but what I do know is that I will continue to keep my faith and belief that I will be ok, because it is working so far.
Sunday, June 23, 2013
Give me a definition for "Normal"
It's been several weeks since my last posting, I have to admit each time I sat down to write something the screen remained blank. I couldn't think of a thing to say that didn't feel contrived. I want this blog to be real and honest, not a way for me to throw a random dialysis joke your way. And to be truthful things have been "normal" for the past for weeks. Oh "normal" you say, what the heck is that. I am certainly living anything but a "normal" life. Well actually I am. Let me elaborate...
There is no such thing as "normal" I hate to break it you. Normal is a 5 letter word that we give way too much credit to. Everyday is "normal" if you rise up in the morning and lie down at night. That's where it begins and ends. We all have a different opinion or understanding for what is "normal". So how can something so different be the same for everyone?
For me this is "normal": 3 days a week for 4 hours I go to dialysis and now that my fistula is doing the job for which it was intended, I get 2 large needles in my arm for treatment. On my 2 off days, I walk, or do yoga, take care of my family, talk on the phone, shop, cook, clean, go on Facebook. Oh am I boring you, yes me too. (insert yawn) at this point it is pretty boring. I guess you can even say it's "normal".
Why are we so concerned with what is "normal" there really is no such thing. I guess we can say mundane, routine, predictable but that sounds kind of lame right? So we focus on what "normal" SHOULD be. What SHOULD it be? Well, frankly, mundane, routine and predictable. For now "normal" is good. Nothing out of the ordinary or scary or challenging or overwhelming is in my way. It's true you can adjust to anything and for now I'll take it.
There is no such thing as "normal" I hate to break it you. Normal is a 5 letter word that we give way too much credit to. Everyday is "normal" if you rise up in the morning and lie down at night. That's where it begins and ends. We all have a different opinion or understanding for what is "normal". So how can something so different be the same for everyone?
For me this is "normal": 3 days a week for 4 hours I go to dialysis and now that my fistula is doing the job for which it was intended, I get 2 large needles in my arm for treatment. On my 2 off days, I walk, or do yoga, take care of my family, talk on the phone, shop, cook, clean, go on Facebook. Oh am I boring you, yes me too. (insert yawn) at this point it is pretty boring. I guess you can even say it's "normal".
Why are we so concerned with what is "normal" there really is no such thing. I guess we can say mundane, routine, predictable but that sounds kind of lame right? So we focus on what "normal" SHOULD be. What SHOULD it be? Well, frankly, mundane, routine and predictable. For now "normal" is good. Nothing out of the ordinary or scary or challenging or overwhelming is in my way. It's true you can adjust to anything and for now I'll take it.
Tuesday, June 4, 2013
Simple Gifts
So you know those yoga pants I was telling you about a few weeks ago, well you will be happy to know that they have finally made it to the place for which they were designed. Yes, I started taking Kripalu (gentle) yoga last week. Having the catheter removed freed me physically and emotionally in a way that I wasn't prepared for. All these months of being physically tethered was exhausting in so many ways. Not having to be subject to the pure exhaustion and drainedness (is that even a word?) is quite a revelation. I feel like me again. I can go and do and not feel weighted down. Starting yoga was gift I had to give myself.
I know I am a long way to the end of this. I have no donor, therefore no kidney to fix this mess I am in. Eventually it will come, but for now this is what I have to face. Each day that my faithful golden retriever wakes me at 5:30 like clockwork, is a day I get to give myself another simple gift. It doesn't have to be anything tangible, but the gift of breathing each day and putting one foot in front of the other or the gift of making my kids breakfast or calling a friend is a gift I get to cherish.
Dialysis days are difficult, sometimes painful, always long and often tiring, but that dialysis machine is a gift in its on way. It saves my life on regular basis, it does for something that my own body is unable to do. It makes me angry sometimes that I have to do this, and when I am going through it, I don't see the gift it provides. It is only when I step away from it when I take my drive home and walk in the door that I see what an important gift it is.
Everybody has shit that that they have to deal with. We all struggle with something. No one is immune, but when you add a chronic illness to the mix, all the little things pile up and it gets harder to separate the good from the bad. I have learned that those little things that pile up are the gifts and we just need to sift through the pile and realize it. That pile of baseball games, dance recitals, practices, carpools, dinners to be made, laundry to be folded. Yes it can get overwhelming and sometimes we are drowning in those little things, but just think of all the gifts you have in your life and then it won't seem so bad.
I know I am a long way to the end of this. I have no donor, therefore no kidney to fix this mess I am in. Eventually it will come, but for now this is what I have to face. Each day that my faithful golden retriever wakes me at 5:30 like clockwork, is a day I get to give myself another simple gift. It doesn't have to be anything tangible, but the gift of breathing each day and putting one foot in front of the other or the gift of making my kids breakfast or calling a friend is a gift I get to cherish.
Dialysis days are difficult, sometimes painful, always long and often tiring, but that dialysis machine is a gift in its on way. It saves my life on regular basis, it does for something that my own body is unable to do. It makes me angry sometimes that I have to do this, and when I am going through it, I don't see the gift it provides. It is only when I step away from it when I take my drive home and walk in the door that I see what an important gift it is.
Everybody has shit that that they have to deal with. We all struggle with something. No one is immune, but when you add a chronic illness to the mix, all the little things pile up and it gets harder to separate the good from the bad. I have learned that those little things that pile up are the gifts and we just need to sift through the pile and realize it. That pile of baseball games, dance recitals, practices, carpools, dinners to be made, laundry to be folded. Yes it can get overwhelming and sometimes we are drowning in those little things, but just think of all the gifts you have in your life and then it won't seem so bad.
Wednesday, May 22, 2013
The Waiting is the Hardest Part
I would like to thank Tom Petty for the title of my blog. Hey, I give credit where credit is due. The thing about dialysis is that there is always some kind of waiting going on, I should rephrase that, when you have kidney disease there is always some kind of waiting.
In the beginning, when you find out you have kidney disease you wait to see what kinds of meds will help, you wait to see how much time you have before going on dialysis and so on. My waiting has ebbed and flowed over the years. I have had kidney problems for the better part of my adult life and probably even younger. My doctors waited a good long time before deciding to biopsy me to determine what I "really" had. However, once they did, and realized I have a kidney disease with a really long complicated name, my waiting to get on dialysis was now at as long as it was originally stated to be. I kind of went from oh 5-10 years till dialysis and transplant to 6 months.
I don't like waiting, I tend to be a bit impatient ( for those of you who know me can insert your comment here) I suppose most people don't like it either, but then why do we say "good things come to those who wait"? Just sayin'! So now I wait, a lot. I wait to go in to dialysis, I wait for it to be over, I wait for doctors, I wait in waiting rooms, I wait for my fistula to work better, I waited to get the catheter out (YEAH!!! IT'S OUT!!!) I wait on a list to get a transplant. I wait, I wait, I wait.
Waiting on a transplant list is like waiting for a train in front of our house. Obviously it is not coming. (unless you live at the train station ;) Not to say that transplants aren't occurring everyday all over the world, but sadly in New York State the wait time for a standard donor for someone on the transplant list is 8-10 years. Yes, I said that correctly, Michigan 6 years, Colorado 4 years. That means that you should get on the list before you have kidney disease so by to the time you need it will be available. Talk about waiting, for someone like me, all that wait time is time on dialysis. I don't know about you but I have no intention on waiting on a transplant list on dialysis for up to 10 years. Remember what I said before, I am not a patient person.
So what's a girl to do? You search, you look high and low, turn over every rock and ask anyone and everyone you know who could possibly be a match to donate a kidney. Sure sounds simple, it's not simple but its doable. You got 2, you only need 1, isn't that cool how that works out. Neither of mine are up to snuff so why not consider sharing. Didn't we learn that in kindergarten? Sharing is caring.
I have plenty of information on how to share to with me, or maybe someone else you know who needs to stop waiting. There are organizations like the National Kidney Foundation who can help you understand what being a kidney donor entails. And there are plenty of organizations out there that help find matches for people. I know someone who at the end of this month will be part of a 16 person chain for donation. Isn't that amazing. His wait time is over.
I am still waiting, I hope for not much longer.
In the beginning, when you find out you have kidney disease you wait to see what kinds of meds will help, you wait to see how much time you have before going on dialysis and so on. My waiting has ebbed and flowed over the years. I have had kidney problems for the better part of my adult life and probably even younger. My doctors waited a good long time before deciding to biopsy me to determine what I "really" had. However, once they did, and realized I have a kidney disease with a really long complicated name, my waiting to get on dialysis was now at as long as it was originally stated to be. I kind of went from oh 5-10 years till dialysis and transplant to 6 months.
I don't like waiting, I tend to be a bit impatient ( for those of you who know me can insert your comment here) I suppose most people don't like it either, but then why do we say "good things come to those who wait"? Just sayin'! So now I wait, a lot. I wait to go in to dialysis, I wait for it to be over, I wait for doctors, I wait in waiting rooms, I wait for my fistula to work better, I waited to get the catheter out (YEAH!!! IT'S OUT!!!) I wait on a list to get a transplant. I wait, I wait, I wait.
Waiting on a transplant list is like waiting for a train in front of our house. Obviously it is not coming. (unless you live at the train station ;) Not to say that transplants aren't occurring everyday all over the world, but sadly in New York State the wait time for a standard donor for someone on the transplant list is 8-10 years. Yes, I said that correctly, Michigan 6 years, Colorado 4 years. That means that you should get on the list before you have kidney disease so by to the time you need it will be available. Talk about waiting, for someone like me, all that wait time is time on dialysis. I don't know about you but I have no intention on waiting on a transplant list on dialysis for up to 10 years. Remember what I said before, I am not a patient person.
So what's a girl to do? You search, you look high and low, turn over every rock and ask anyone and everyone you know who could possibly be a match to donate a kidney. Sure sounds simple, it's not simple but its doable. You got 2, you only need 1, isn't that cool how that works out. Neither of mine are up to snuff so why not consider sharing. Didn't we learn that in kindergarten? Sharing is caring.
I have plenty of information on how to share to with me, or maybe someone else you know who needs to stop waiting. There are organizations like the National Kidney Foundation who can help you understand what being a kidney donor entails. And there are plenty of organizations out there that help find matches for people. I know someone who at the end of this month will be part of a 16 person chain for donation. Isn't that amazing. His wait time is over.
I am still waiting, I hope for not much longer.
Tuesday, May 14, 2013
What Goes in Must Come Out
I hope all the Mothers out there had a lovely Mother's Day. I did, I had great walk at the beach with mu husband and boys, watching my boys look for cool rocks and sea glass is one of my favorite times. They get along, I can sit back and enjoy the sun and breeze and they bring me random things to look at that are so exciting to them, they think it is some cool treasure. That's what being a kid is all about. It's nice to look at the world through their eyes once in a while. We had a great dinner with family at a little Italian place we've been going to for years, and getting to hear Sal the crooner sing the Sinatra classics during my eggplant parmigiana was an added bonus.
So onto the matters at hand. When I started this journey called dialysis I didn't know the half of what I was in for. And to quote my vascular surgeon " you were angry and very very sick when we met in September" you just didn't know what was expected. My husband said if the doctors told you the truth about all the things they would have to do me I would't show up, no one in their right mind would.
So I got in the front car, strapped on my seat belt, pulled the roll bar down and held on for dear life for the roller coaster ride I have been put on. Getting the catheter for dialysis was the first loop. I have been hanging on stuck in this loop upside for the last 8 months. FINALLY after many dips and turns and more loops the fistula access in my arm is working well enough to get the catheter out of my chest. No more! Adios! Good riddance!! I made it safely back on solid ground with nothing more than a couple of stitches.
Now I am not saying that this is over, oh no, far from it, but I have graduated, so to speak to the
elite class of dialysis patients, the needles only group; but on the other hand, THERE IS NO GOING BACK! The fistula is the only game in town, no back up plan or safety net. It is just something else to get used to. And my semi-permannet sharpie tattoo on my arm drawn to indicate where they can stick me will be a nice fashion statement in the summer when sleeves are optional. Yes that freaks me out! But that's what XANAX is for ;)
I hope that from now I only ride on the kiddie coaster, I don't want to hang upside and do loops and twists and turns. I don't mind the little dips and hills, I can handle that. In the meantime on Thursday I will be taking the longest shower human history!!!
So onto the matters at hand. When I started this journey called dialysis I didn't know the half of what I was in for. And to quote my vascular surgeon " you were angry and very very sick when we met in September" you just didn't know what was expected. My husband said if the doctors told you the truth about all the things they would have to do me I would't show up, no one in their right mind would.
So I got in the front car, strapped on my seat belt, pulled the roll bar down and held on for dear life for the roller coaster ride I have been put on. Getting the catheter for dialysis was the first loop. I have been hanging on stuck in this loop upside for the last 8 months. FINALLY after many dips and turns and more loops the fistula access in my arm is working well enough to get the catheter out of my chest. No more! Adios! Good riddance!! I made it safely back on solid ground with nothing more than a couple of stitches.
Now I am not saying that this is over, oh no, far from it, but I have graduated, so to speak to the
elite class of dialysis patients, the needles only group; but on the other hand, THERE IS NO GOING BACK! The fistula is the only game in town, no back up plan or safety net. It is just something else to get used to. And my semi-permannet sharpie tattoo on my arm drawn to indicate where they can stick me will be a nice fashion statement in the summer when sleeves are optional. Yes that freaks me out! But that's what XANAX is for ;)
I hope that from now I only ride on the kiddie coaster, I don't want to hang upside and do loops and twists and turns. I don't mind the little dips and hills, I can handle that. In the meantime on Thursday I will be taking the longest shower human history!!!
Tuesday, May 7, 2013
Dressed to the Eights
I apologize for the delay in this latest installment but Candy Crush has taken over my life, I am thinking of starting a support group, anyone is welcome ;).
So you are probably confused about the title of this blog. I would like to thank my mom for the title, I had a different one in mind but she came up with this. You know the old saying "dressed to the Nines", well obviously this is not that! Let me elaborate. When you go to dialysis you are there for the long haul. It is important to be as comfortable as possible since you must stay put for 4 hours. The variation in comfortable dialysis clothes is quite interesting as one might think. One man's comfy is not the same for all.
I have my dialysis uniform as I like to call it. A variety of black yoga pants that have never once seen the inside of a yoga studio, a tank top or t shirt with a V-neck (need access to chest catheter easily if you have one) and some lightweight long or -3/4 length sleeve shirt. When you have a fistula access in your arm you need to have your arm exposed the whole time. Can't wear a heavy sweatshirt or the blood pressure cuff won't fit comfortably. I have a variety of colors that I can mix and match. I always match and coordinate, cant stand to leave the house if I clash!
On the other hand there are some patients that have adopted there own version of a dialysis uniform. I have seen it all people and it aint pretty! There are the sleeveless folk, I am not referring to tank tops, I mean the people who literally cut the sleeve off of 1 dress shirt to expose the arm needed for dialysis. I kid you not, You can imagine that this would mostly be men who do this, but no, sadly there are a few less than fashion forward woman who lop the arm of the shirt and call it a day.
Then there are the slicers, those that slice an opening in the front of a shirt to allow for catheter access. So they sit for 4 hours with a gaping hole in there shirt with tubes hanging out, not pretty. There are many elderly people on dialysis and I have learned that becoming old means you are cold all the time, so most of the winter we were all bundled up, well some of these nice people are still bundled up. They wear hats, gloves, long johns! Not joking! Pajamas with slippers, oh and my all time favorite is the socks they give you when you stay at the hospital, the beige ones with the no-skid marks on them.
It is most amusing to see the parade of torn and worn dialysis uniforms. I have gained a new appreciation for my wonderful sense of style and fashion ;)
So you are probably confused about the title of this blog. I would like to thank my mom for the title, I had a different one in mind but she came up with this. You know the old saying "dressed to the Nines", well obviously this is not that! Let me elaborate. When you go to dialysis you are there for the long haul. It is important to be as comfortable as possible since you must stay put for 4 hours. The variation in comfortable dialysis clothes is quite interesting as one might think. One man's comfy is not the same for all.
I have my dialysis uniform as I like to call it. A variety of black yoga pants that have never once seen the inside of a yoga studio, a tank top or t shirt with a V-neck (need access to chest catheter easily if you have one) and some lightweight long or -3/4 length sleeve shirt. When you have a fistula access in your arm you need to have your arm exposed the whole time. Can't wear a heavy sweatshirt or the blood pressure cuff won't fit comfortably. I have a variety of colors that I can mix and match. I always match and coordinate, cant stand to leave the house if I clash!
On the other hand there are some patients that have adopted there own version of a dialysis uniform. I have seen it all people and it aint pretty! There are the sleeveless folk, I am not referring to tank tops, I mean the people who literally cut the sleeve off of 1 dress shirt to expose the arm needed for dialysis. I kid you not, You can imagine that this would mostly be men who do this, but no, sadly there are a few less than fashion forward woman who lop the arm of the shirt and call it a day.
Then there are the slicers, those that slice an opening in the front of a shirt to allow for catheter access. So they sit for 4 hours with a gaping hole in there shirt with tubes hanging out, not pretty. There are many elderly people on dialysis and I have learned that becoming old means you are cold all the time, so most of the winter we were all bundled up, well some of these nice people are still bundled up. They wear hats, gloves, long johns! Not joking! Pajamas with slippers, oh and my all time favorite is the socks they give you when you stay at the hospital, the beige ones with the no-skid marks on them.
It is most amusing to see the parade of torn and worn dialysis uniforms. I have gained a new appreciation for my wonderful sense of style and fashion ;)
Subscribe to:
Posts (Atom)