after our trip to the coast i came back with an additional 13 pounds of fluid in my body. i feel like a balloon that has been inflated beyond capacity. tie a string to my toe and put me in a parade! of course i would never fly with all that extra weight. not like i am gonna blow away here anytime soon. day after day, one reason or another i have not taken the meds to help. the fluid pill makes me itch from the inside out. it feels like i could just scratch my skin off to get to where the darn itching is. my dr. has even given me meds to counteract this effect. there are other times i itch like this and it is just the combination of meds i take along with the disease. all that can be done to help has been. this is just a case of it is what it is. last night after a great day out i decided to bite the bullet and take the fluid pill. it is much stronger than the lasix which is the first prescription most get. this will leave my skin dry and even cause some joint pain but i will be able to breathe better. so here i am this morning 5 lbs lighter. this means, and i already knew this, that i will need to go through this one more time to get back to what is normal for me.
i am not talking about this just to be complaining. there is actually something very nice, for me at least, about this. friday night i got together with a friend who also has some of the same heart issues as i do. so that is not good for her and i hate it for her. she has two boys who are still young and now a new granddaughter. she has had enough loss in her life to deal with. all of this aside we went out friday night and it was just fun. neither of us had to feel like we were holding someone else up or taking too long to walk. when you are out with someone who doesn’t have any health problems they are walking much faster than we can. sometimes there is the look back to see what happened to you and other times people get to the table and realize they are alone. most of the time we all just laugh so no feelings are hurt. going out with someone who can’t walk any faster than you means you both get there at the same time and you both understand. no apologies are needed. a whole evening of not feeling like i am slowing down anyone else. i was exhausted by the time i got home but felt so great at the same time.
not looking forward to taking another pill but i know how fortunate i am that there is a pill. it has come to pass that i know how my grandmother felt. she used to talk about how much the world had changed since she was a girl and when i think about how much has changed since i have been alive. things that use everyday like the microwave have been developed in my lifetime. medicine has really changed, what is being done with robotic surgery completely amazes me. medication is nothing short of a miracle. things that in the past were considered terminal/incurable are not only being cured but those things that used to cause great suffering are now an inconvenience. just think, cancer that was a death sentence is now treated and in months the patient is cured! even if not cured the years added by modern medicine is astounding. i have a defibrillator in my chest!! a pacemaker to set the rate of my heart, medication to push fluid out of my body. that we can create a human being and give that human being life is unbelievable. to keep a human being alive longer, and not just alive but alive and living a happy life, is incredible. glad i got sick now and not a few years sooner. grateful for the time i had with my friend and grateful for the time we both have been gifted by the medical innovations.
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while searching the internet i came upon this post, unfortunately he did pass on and yet he left us all these words. sometimes words are all we have, then we don’t even have them….
If I have eight months to live, there is a lot of fun to be had. Once I am too sick or tired, I can watch movies, read books and have friends over. When I become too weak for that, I can enjoy the peace of our sweet home and the hugs of my wife. Not a bad way to spend the rest of my life.
My mantra of “it is what it is” means more to me now than ever. Regretting anything left undone would be a waste of time and energy. I will enjoy what is left. LEE LIPSENTHAL, M.D
just this afternoon my love and i were discussing this topic. he had asked me how i was and my reply was the standard “fine.” he looked at me and said “you are a lot of things but you are not fine.” at the time i was almost lying in my recliner. it was a hard day so we were here just hanging and talking. lots of times when i am feeling pain it helps to think of all the comforts in my life and how happy i am. not that it eliminates the pain completely but it really helps me. one of the great things about us is we really get each other. that is one of the best gifts we can receive.
when i reply that i may not be fine in the literal sense yet i am fine with my life. what better place to die than here? who better to have at my side during this adventure? i am sad and happy all at once that he will not be with me on my next adventure. we will have to do the hardest thing two people in love ever have to do, we will have to let go. we have held each others hands for 20 yrs. it has been a good 20 yrs. life is good.
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the last week of my yesterdays have been ……. what i have been expecting. my todays are hard to pin down. tomorrows are anyone’s guess. sunday left me thinking about what has been and what is to come. there are so many famous quotes and inspirational words that have been offered to make us ponder or recognize how fortunate we are.
all last week (and maybe before) just getting out of bed was almost too much. i had hoped to rally and keep a couple of engagements with friends. it didn’t work out though. most days i managed to drag myself to the living room by 3 or 4 in the afternoon, made it to bed somewhere after 4 a.m. but some days as late as 6 a.m. the thing that strikes me is very few people know or understand the exhaustion that goes along with heart failure. we can all identify with being very tired or in some cases exhausted but not to the same extent. there is something so fundamental even organic when you are feeling this that keeps it from being quite like anything else you have ever experienced. i often chide myself and say i am just being lazy. what else could make me lay in bed or this chair and wait to go to the bathroom until the last possible moment? or lay here so hungry, and know that being a diabetic i need to eat, yet not be able to? even the thought of eating makes me tired. all that effort for what? just gonna need to do it again later.
one day my man let me know that we were going somewhere the next day if i could. this seemed to mean something to him so i asked him to make sure i was up and had enough time to be ready. before we left he told me we could do it another day if i were too tired but i wanted him to have a good day so off we went. as we pulled in to the parking lot of our favorite tea room i felt like crying at how lucky i am. when we were shown to our table there was a bouquet of yellow roses on the table. these are my absolute favorites and yet i didn’t make the connection that they were for me. the smile on his face and the hostess beaming and saying “i think she is going cry” made me realize they were for me. by the time we were done all i could think was how great my life is and i hope we can go home now and take a nap.
that was a yesterday. these are not unexpected days. they have been waiting in the wings. we knew they were coming. well i did anyway, not so sure about him. he seems to have some magical thinking. if we just keep making plans then i can’t die, right? yesterday we made arrangements for a cruise in december. so we have a trip to the n.c. beach in october where we will watch wild horses. saturday is his birthday and we are having dinner with friends, the next day Heather is coming over to make her dad breakfast and he is very happy about that. the next week we have a reception for a sweet couple.
some days are just beyond my control. the mind is willing but the body is weak. sitting here tonight i am acutely aware of certain truths. being here is so much better than so many other places i have been. this man who loves me, family that i adore, friends that accept me as i am, cats who make me laugh and give me comfort. tonight i am inside while so many are on the streets, cool when others are not, loved and cared for as so many will be not just alone but lonely.
whatever my tomorrows bring i will be grateful. no moving quotes or words of inspiration, i am quite plainly grateful.
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we went to a movie today. through most of the movie i had angina pain. so here goes the whining, you have been warned.
angina pain is like a combination of the worst pain just above your shoulder-blade in your back (for women). if you have had a toothache, strep throat, broken bones or migraine headaches you have some idea of what this is like. it can last 5 min or an hour. it can stop hurting then 5 min later hurt again. then the nausea comes and i am trying to decide do i call 911 or do i sit here and see what happens? obviously i opted for waiting to see what happens. afterward we went to dinner at a local cafe and started talking about life in general. pretty soon he mentions that his fear is my dying before him and i laugh since my fear is not going before him or having a stroke. as hard as i think he will have it, i will have it far worse. so it is not even something i am willing to contemplate. he brings up the age difference and i remind him of how healthy he is and that his aunt is 103!
the angina just reminds me that this thing is happening. it is really happening and he needs to understand that wishing it away is not going to change anything.
my greatest fear is not dying but having a stroke that takes away my ability to make my own choice. i am in no hurry to die and yet when i think about it even in the darkest hours there is no fear. i am grateful and feel lucky to be at this place in my life. at the end of each day i can honestly look into my heart and say if i died tonight i would be happy. there have been years in the past where i felt unfinished and would have left with a heavy heart. my love has given me a well lived life. my love for you has brought me to this place. just remember as long as i am in your heart i am not really gone.
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i am exhausted. if you have ever been tired of being tired then you get my drift here. in the past while going to grad-school, working and interning more often than not if i had any spare time it would have been used to get some much-needed sleep. while in the army, where there is no such thing as a 40 hr work week, and trying to raise a child, sleep was a rare and treasured time. like most of the world i have known exhaustion but not this kind.
this is different and the knowledge that it comes from being ill does not make it any easier to endure or explain. it is an embarrassment that at times i do my best to hide and other times just avoid explaining yet again why i am not talking on the phone or going out with friends. even with my husband there are times when it seems like too much to ask, just how far can any one person’s understanding go? how can i reject an offer to go out once again, especially knowing he will not go without me? so smile, say give me 30 minutes and do whatever it takes to get out that door and in to the car.
just breathing is a job. seriously it is hard work and part of what exhausts me. if i eat i know that i am going to need to rest for a couple of hours afterward. that’s right, eating for me is like jogging a couple of miles or so. at times just opening my eyes is so much effort i may sit here with them closed. this is not just how i am affected. anyone with congestive heart failure suffers the same problem.
here is where the math comes in. with congestive heart failure the congestive part is the fluid that builds up in your body because your heart can not pump hard enough to support the circulatory system, and thus push the fluid through the organs needed to then push it out of your body. so it builds up, many women know how it feels to once a month get a pound or two of fluid and they think that is, and it is, uncomfortable. so imagine if you woke up with 6 to 8 extra pounds of fluid. first of all try to picture what that many pounds of fluid looks like. how many gallon jugs would that fill? now ask where in your body is all this fluid going to be held? of course some is in the extremities, legs, ankles and hands. the rest is in the trunk of your body. so start with a gallon jug of fluid, picture that being poured in to your abdominal cavity. just how much “extra” room do you think surrounds your organs? so all this fluid is pushing against your heart, liver, kidneys, pancreas and any other organs that have not been removed. lungs no longer have the ability to fully expand.
i am exhausted, luckily it doesn’t take any energy at all to think about how wonderful my life is. how much love i have to give and am given so freely by others. we live in such a miraculous time and place. it is hard to breath and yet i am breathing, that is a gift that may end at any moment and that is okay. like most gifts we enjoy them and treasure them. i grew up very poor so there weren’t a lot of gifts, for this i am grateful. it taught me to not ever take a gift for granted. life is good, life is our greatest gift.
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yes Aimee went to rehab today and she will be there for 6-8 months. I hope she continues to be optimistic and her support system stays in place. maybe that is what really makes the difference.
looking back it occurs to me that my blog has many entries focused on others without much tie in to myself. with some reflection, really not that much:), it is clear how that has happened. my life has been about others. as a nurse, there is the patient. as a therapist there is the patient and even as a professor/teacher it is about the students. most of us have others in our life that we give our love and support to. mom’s and dad’s have children, spouse’s have likewise, children have parents that may need their care. parenting never ends if you are lucky and then there are the grandchildren.
there has been little time to think about my own situation. situation is an odd word for this, not so odd if it is understood how i refer to my multi-system failure that landed me on life support in ICU as “the event.” it seems tedious to refer to the event in medical terms or what would feel like a bit of melodrama at this point. although when i read of others and their struggles it reinforces my belief that we all have a story. as we go through our day we have a choice to have faith, or spin in uncertainty that can make us suffer beyond our physical self.
recently though I have had things on my mind to write about, however, two things stopped me. one is the awareness of how this blog has changed from its original concept. second, is the awareness that i am not a writer. it’s ok. to know what our gift is, is a blessing. when reading other blogs i am in awe of the creativity and flow of the story. the new goal for me is to remember and follow my true purpose in writing at all. as for the other it is my intent to be ok, really ok, with my limits as a writer. this was never meant to be anything more than a personal blog. future posts may be boring to some who now read my postings. there are so many more interesting people out there. those that become bored please do not feel the need to comment on said boredom.
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getting texts from middle sister with updates on the mother. much like Pavlov’s dog the muted ding on my phone elicits the intake of breath. it is not from calif so release the breath. it is from calif so just look at the first few words, okay so far, so finish the text. a call from nephew and a stillness, his voice lets me know that it is not the news we are all expecting any day now. some texts ask if this or that is normal under the circumstances. middle sister and nephew are not in the medical field. they are not like younger sister and myself. their lives are much different from ours. they are the least prepared for this task and yet they are the ones called on now. the only thing to do, reasonably, is be a support for them.
as much as my mind dismisses this and seeks to maintain focus on her it is at times a challenge. it is a challenge not to feel my own death coming and wondering if it will be similar. would i make the same choices? the toll on those around her lead me down the path my own family will take in the not too distant future. one question that snaps at my heels, like the crazy border collie nora, why not me? she was diagnosed long after my own heart failure, she was able to have heart surgery to repair what can never be repaired in my own. the man who had the same condition and device leaves his family months ago and yet here i am. survivors guilt is a term anyone in the mental health field is familiar with. to know what it is did indeed help me through some tough times. after much searching it is hard to call this survivors guilt. though it is a question likely to never be answered it is not guilt that i feel so much as how does this happen? does it go back to life just being random? is there a flow to this not seen from so close? is more required of me before i am released? so many are deserving and at times though grateful for the sentiment, it is too cliché to say i am needed or i have a great attitude. so many others are more needed than one like me, others want to live as much while some have proven their value to the world.
it is humbling and awe-inspiring to wake each morning and think here is another day given. another kiss from my love, another smile to share, another day to wait and bear witness to the passing of another human being.
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word association has been of interest to me for years longer than my psychology career. how we go from one thought to another or retrieve unused but stored information in our brain fascinates me. even before my teaching years NLP ( neuro-linguistic programming) made perfect sense to me. over the past few years there have been many studies of how we store and learn information. while teaching, this gave me a way of helping students who were struggling, if it is understood how this individual learns and is taught in that form, there is a better chance of success. this is all relevant now as I am trying to decide what thoughts to lead with and how to keep them all in some relatable form.
the death of Christina Symanski has been a bit of gossamer that can’t be cleared away. the only way for me to move forward, is to put it in perspective. perspective is a word often used by those who don’t actually have the ability to use it. when speaking to someone who has gone through a life changing event the best thing is often to put this event in to perspective. recently a man was sharing with me that his mother had announced to him she had been molested as a child. he was quite off put by this and in his words “shut her down.” my advice was solicited and given. it would have been more productive if this woman could have sat with an old friend or therapist to discuss this event. if she still felt the need to share this with her son then she could do so from a position of perspective. he felt she had just dumped this on him. this goes back to how much do we share and with who? just want to add that in my opinion the recent news of boys being molested in her home town (Pennsylvania) was a contributing factor in her anxiety. having the chance to put this event in to perspective at the time would have aided her over the years. it still goes back to my question of what is the motive for telling someone about such an event? if it is just to make you feel better, stop and think this through. what do we want the outcome to be? more than one cheating spouse has said they had to tell the other as they deserved the truth. this has seemed a bit cowardly to me. some burdens must be carried by us alone, in my opinion.
there has been very little information regarding the passing of Christina. do we really need to know more? it is a tragedy her family and loved ones will have to find their way through. it is doubtful she could have lived for a month without food and water. food yes, water no way. does it matter if in her blog, looking back, that there were hints she might end her life? these were her decisions and no one else can tell us if our life is worth living. no one can give you a reason to be hopeful if you can not find one in yourself. this is a tragedy that is played out daily around the world yet we have given much time and thought to this one individual. is it due to her perceived good life? she was an artist and very active in the spinal cord injury community. does examining her life reassure us we would not do the same thing? we see a person who has been taken advantage of and say it wouldn’t happen to us since we are smarter and wouldn’t put ourselves in that position. the old “those people vs. us” theory?
in my search for others going through similar circumstances it has been my good fortune to find much more than that. it has been an inspiration to read of how others are caring for their loved ones with either terminal or life-long illness/disabilities. still others have the disability and are living their life to the fullest in their own way. so 2011 has come and gone. it was a good year and it leaves me hopeful for the next year to come. being hopeful is as important to me now as it has been throughout my life. that optimism has sustained me over the years and I trust that it will continue to do so. our hopes adjust to the situation. knowing my time is running out means I won’t be hoping for that promotion ( no longer working) or the big trip (no longer taking trips over a few hours and no flying at all). hope still lives here though, it is in the hope of being remembered, of leaving a legacy that will be passed on. the hope of still having some good days, being a good friend and companion to others, these are my hopes now. do I still make New Year’s resolutions? yes I do.
so now we come to the point of this post, making resolutions or not. this is a personal choice and yet I read with interest the blog hosted by Shane Hodge, the comeback. his post was regarding making these resolutions and what it says about us if we don’t. this man is on fire and has much to share with the rest of us. shane wrote a book by the same title and I am in the process of reading it. briefly what he shares is how he came to his own comeback. through conversations with his dying mother certain truths became more evident to him. his mother was able to leave this legacy due to his ability to hear what she was saying. this is my own hope to leave a legacy with loved ones that will be remembered. to know that your philosophy on life is being honored can be our greatest accomplishment.
after reading an article about resolutions shane wrote about his feelings and what this said to him. the poll said that more people are not making New Year’s resolutions, the reason given is they felt nothing could change for the better. they were expecting more pain and bad news for the coming year. the following is from the comeback site. “I’m going to sit down and write a nice long list of all the stuff that I no longer want in my life next year. I’m going to write a list of all the things I want to achieve next year, I’m going to create and commit to a bunch of New Years resolutions. Why am I going to do that? I will do it as I refuse to let “Oh Well” control my life and I can make sure that happens because? I believe in Miracles.” (from Shane Hodge w/permission)
this led to my own poll of who is making resolutions and why/why not? for now I am going to go rest and come back later. this is unusual for me to post more than once in a day but I have much on my mind now and this helps. the other reason is one of my cats, chloe, is making it very difficult to ignore her. posting a pic which is also new for me.
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4 a.m. is a great time to work on the to-do list. by this time any hold out for sleep has passed, time to organize the cd’s or all those pesky plastic storage containers that disappear with the socks in the wash. if that is too much then it is on to the list. the mind boggles at the idea of some who seldom make such a list. it has been my habit for many years and has served me well in general. at the beginning of this journey one way to cope and put things in to perspective was to revert to the list. to my joy this has turned in to a multiple list job. vikto frankyl recommends we find the joy/purpose in our life and we will be able to face even the most devastating circumstances. if it was good enough for this holocaust survivor it seemed good enough for me. as the list has diminished some concern/thoughts turned to a quote stating that is when you know you are done with life. if there is nothing else you want to do (and I am hoping they mean the small things like waking up) then there is a void and death sneaks in to fill it.
it may be purposeful indeed how some items on my list are still outstanding. now after a conversation with my man it occurs to me how I can do something that will bring him joy in years to come. he often says he is not of this era and feels he has been left behind by technology. it would seem geekdom in our family belongs to me. as de-cluttering continues at a snail’s pace, it is apparent the old vhs tapes are not going to be donated and will not be enjoyed in the future unless they are converted to dvd’s. this it seems has made me almost giddy, do you know how long it is going to take to complete this task? I am not the kind of person who walks away from a job not finished and it is such a gift to add this to my dwindling list.
after christmas, sharing information regarding what a caregiver can expect from a terminal loved one is on the list. fascinating that a m.d. would think himself qualified to write this. it is almost laughable, it begins pretty strong and quickly goes downhill. this is not a person who has suffered personal loss. projecting some months to the new project and then there are always holidays, birthdays and …. well the list does go on. one more thing to be grateful for, think I will put it on my list:)
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in feb of 2012 it will be 2 yrs since I had the Rolls Royce of devices planted in my chest. as I lay on the table waiting for the procedure to begin a man started talking to me. he started saying how lucky it was that this device had recently been found to extend the life of patients with this particular problem. it seems that even though I am a rather good therapist the left side of my heart has been refusing to communicate with the right side of my heart. this has caused my heart to be out of sync and with all the problems it already has this is not good news. it is freezing, did I mention, in the OR room? it always is, a nurse brings me a heated blanket and she has quickly become the kindest person I have ever met. this man’s voice is coming from somewhere just beyond my line of sight. he is saying it is the golden Cadillac, no wait it is the rolls royce of the implanted defibrillator devices. mine, he says, has not just two wires but it has a third to force my two halves to speak to each other. yes unlike humans my heart can be forced to communicate in a healthier way. I can’t help but wonder if a little shock now and then would make people open up and talk in a way that moves them forward? this device I have not only shocks you if and when your heart stops, it is a pacemaker and the real coup is how it makes my heart beat as one, as it is intended to.
stay with me here, it all becomes clear how these thoughts are connected, at least I hope so. we have just returned from our brief trip to Charleston, s.c. coming home is always long and tiresome. going, we break the 7 hour drive into two parts, we stay at a bed and breakfast the first night and then on to our destination. the idea is to be as rested as possible getting there and drive straight through coming home. it doesn’t matter to us if I need a few days to recover once home. the memories of the last few days are more than enough to compensate me for the down time. each year the grandkids get more ….. everything. they are becoming these interesting people with ideas and interests to share and questions, lots of questions. of course it is great to see their parents, Susanne ( Chris’ first wife) and Heather. my relationship with them all has come so far and is so gratifying. these are wonderful people and I am so grateful for them, I quite literally can die happy now. there is something about my life that releases me from any angst at what lies ahead for me. my sister and I have a relationship that makes me proud of us both. living so far apart can make it difficult to connect but we can pick up as though no time passed. it is my great fortune to have friends that feel like family and their texts and calls raise my spirits daily.
aah the connection? just a few months ago I decided to have the rolls royce disconnected. not that I am giving up, I simply do not want my dear man or anyone else for that matter having their last memory of me involve this device shocking my body even though my heart has given up the call to battle. in the past my request has been to live a few more days, just long enough for one more memory. long enough for my grandchildren to know me, love me and remember me. that is so much and I dare not ask for more when I am so blessed. maybe it is my optimism that brings me to the point of delaying this decision. the timing is what I want to feel. in the next few months it may once again feel like the right timing, for now I am looking forward to another Christmas with my loved ones. anything seems possible at this moment. maybe that is magical thinking as they say in the psychology books. frankly my dear I don’t give a …. ( Gone With The Wind was on) it is still my intention to get disconnected, to visit the funeral home so I can do whatever paperwork necessary so Chris does not have to go through the drama of an autopsy. do people generally know that if the loved one has been ill and under a drs. care an autopsy is not required? we can talk about that later. now I am going to recline, wait for my heart to start behaving, and dream of all I have to be thankful for. I hope you had much to appreciate this year, I hope you realize how much you have to be grateful for!
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