Sunday, November 18, 2012

One door closes...

Sooooo, it appears I am once again going to take a stab at blogging my life's adventures. I feel like now would be a great time to start holding myself accountable a little more often and share my journey. It's been so long since I tried to get in touch with myself. And yes, I do know that sounds a bit odd... I had my last day at a job I have been working at around three and a half years and it feels odd. I will obviously miss the money, but I will not miss the negativity. My time could be better spent doing something different. I really need to focus and take the time to take care of myself and my family instead of being twisted up for hours while I am working and then for hours afterwards. Let's just say the next several weeks are a bit of an experiment for me with some little life changes. I will have to see if I can commit myself to the blogging once again. Only time will tell on this one... Thought for the day: No one can make you feel inferior without your consent. - Eleanor Roosevelt

Monday, October 4, 2010

4 Years

Four years ago today I woke up in the afternoon knowing that I was on a ventilator. I can't tell you that I remember being put on a ventilator, but I do remember waking up knowing that a machine was indeed breathing for me. Contrary to what you might think I was reasonably calm about this idea. I had a million and one questions and that tube definitely got in the way. So, instead of waiting for the tube to be taken out, I began to write. Somewhere in my "stuff" I still have those yellow sheets of paper to remind me of where I came from when I need reminding. And truthfully every once and awhile I forget how fortunate and blessed I am.

When I woke up that day I had no idea how long I had been "sleeping" and how much had changed. There were answers to questions I hadn't even known I needed to ask. So many tests were done while I was unaware and the results would change me and my future. I think the first question I asked a doctor was about having more children. Why I asked that when I had a newborn at home I couldn't tell you, but I did. And I got the answer I had no desire to hear. That OB's advice was absolutely never again. Another OB suggested that I could talk to a high risk OB about it after some time and then it would be all about odds. Of course the odds would never again likely to be in my favor. This idea was one of the hardest I have ever had to deal with in my now 31 years. The girl who dreamed of having between four and six children would have to stop at one?!? NEVER. Until recently anyways.

I wouldn't say that I wouldn't welcome another child in my life as a son or daughter, but I am guessing it won't be me delivering said child. And while that reality just about cripples a part of me, the thought of dying or permanently losing heart function is daunting. I don't believe that I can take that risk for the sake of the two people in this family that do depend on me today. My son needs a mother and today someone said to me, "One child with a mother is great, two children without a mother is horrible." That could be what I leave Tim with if I decide that having more children is that important to me. So, I could choose to knowingly risk everything I have for more and then I might never get to experience it or have to experience it in an incredibly debilitated state.

Peripartum cardiomyopathy is heart-wrenching. Well, not literally. It more accurately makes one's heart fail. While I was on the ventilator it was determined that I have a rare heart disorder/disease that can basically be considered pregnancy-induced heart failure. At some point I was told that less than 1/4 of 1% of the female population is diagnosed with this type of heart disease. I have never met anyone who has this issue and it is likely that I may never physically meet face to face with another woman who has been diagnosed unless I actively seek her out. I have heard of someone my Mom knows having a daughter with it, but that's as close as I have come to knowing someone else who deals with this reality.

From the outside today no one would know that I barely skated through things four years ago. I am positive a few years disappeared from some people's lives when this happened in that week four years ago. I cannot think of something a whole lot more stressful to be told than someone you love is on life support for heart and respiratory failure. I know one friend who found out while at work and another who called me in my room and was connected with my Mom in the ICU. A third found out from her mother. My poor brother and sister were each on different sides of the country and my husband was at home with our newborn son.

I remember my Mom being there and trying to comfort me as she told me that if I couldn't leave the oxygen mask alone then they would have to restrain me. I was screaming and combative because my oxygen saturation was in the low 70's and I was choking. And for the first time in my life I understood that I could die. I had no idea what was happening to me, but I did understand that it was serious when a team wheels you quickly into the ICU and a new team shows up immediately. I remember being asked if I had ever been on a ventilator for my asthma and I shouted a resounding, "NO"! And then things went dark. I am told by my Mom that everything happened quite quickly and that she wasn't there as she was asked to leave the room to give them space for intubation.

For many months I decided that it was the sepsis that caused my heart failure, not my pregnancy. I could not face the idea that another pregnancy would never happen for me, or at least should never happen again. I hardly had a chance to enjoy my son before this all came to a head and now I would never get to take another newborn home from the hospital?!? The head of the heart transplant and failure group at Loyola University Medical center tried to tell me when Matt was just shy of one years-old that it was the pregnancy, not the sepsis. He told me that the labs actually suggested long term heart failure, so for the second half of my pregnancy when the swelling was outrageous and I got worn out so easily, I was dealing with the heart failure then. Although he told me then that we would just focus on protecting my heart and getting healthier and that we could talk about pregnancy later, I now know that he never wanted to talk to about a future pregnancy. No doctor in their right mind would be in favor of me taking a chance. I think they believe it's like playing a little game of Russian Roulette.

So, today I look at things a little differently and maybe it's with a touch more reality than ever before in my life. Today I could not in any way take a chance at death or at a significantly diminished life for additional children. My odds for that outcome are too overwhelming. And frankly, it terrifies me. Because of all of this, lots of things are terrifying and overwhelming. It can be a secret hell because while I may no longer be incredibly weak and ill, my memory is sharp. Some days when my breathing is compromised due to allergies and asthma, I have to try to remind myself that I am not dying like I was four years ago. Now I am just learning how to live with the damage that all of this caused in my figurative heart (and mind) vs. my physical heart.

I feel like today is almost as special as my birthday because it was my day to be born again and feel like new life was possible. It was and continues to be a day on which I need to remember that I am so incredibly blessed and loved. I just hope since this appears to be the year when I become more and more in touch with reality that I work harder at building the life I was given a second chance to live.

Thursday, July 15, 2010

Feeling sick...

So I am up in the middle of the night worrying. I know that I am not alone and that there is someone else doing the same thing somewhere in the great big ol' world. However, there is not much I can seem to do to comfort myself. It has been a rough day and I don't really know how to even express myself. So, I will do the best I can to explain my frustration and worry.

I went to my doctor's office to have a follow-up visit earlier this morning. Funny enough I thought I had this one all figured out and low and behold it couldn't have been further from the truth. My heart is aching and truly pounding. My anxiety level is pretty high and I would be lying if I said I see this as getting better quickly. I might have made a BIG mistake this evening causing and intensifying the feelings I am overwhelmed with right now. I know better than to look up medical issues on the internet and yet I just told myself I would just check one thing on my labs that my doctor didn't mention for some odd reason. I was curious what it meant. Should have stayed away like I promised myself I would do.

All I did was seriously cause myself serious stress and anxiety. As I read those letters that made up the words I could have passed out. For as long as I can remember I have rejoiced in the possibilities, earning lots of money, buying my first house, my future with a family, etc. I knew that the possibilities were endless. What I didn't always count on was life and how my choices played into that scenario. Now this may start to look like a personal bashing or a pity party. However, I would say I just really recently starting taking some responsibility for my actions, short term and long term. I have always thought that you could just get back on track and fix everything pretty easily. There were no real hurdles that one couldn't get past. In otherwords I thought that if I took my medicine as directed which I have struggled with for many, and I mean many years, then everything would be righted again. I would lose weight, save money, and be healthy (and much thinner).

Now I would say I knew I was never going to be a supermodel, but I didn't realize the hole I began digging for myself. A hole that could become a early grave. Sounds ridiculous I suppose but at the weight I am with the heart history I have and the recent discoveries of my lab results, I should be thankful I am still kicking. There are no words to explain the onslaught of anxiety this doctor's visit has caused me. I have been feeling like the world as I know it is changing before my very eyes. I want to strike and not go to the specialists and the pharmacist. The medical insurance industry winces and cries when they see my name on their current enrollment list. I am the person who utilizes the full benefits of my insurance coverage.

This year alone I have had two nuclear tests, one echo cardiogram, numerous blood tests, almost endless antibiotics, specialist visits, surgeon consults, one sinus surgery, one CT scan, one upper endoscopy, and close to weekly visits to my internist. Seriously, who knows all of the names of the people in their doctor's office?!?!? Oh and did I mention I have had at least two visits of my own to the ER? Probably not.

It's July. All of this happened over the last six months. And because of this I am the walking wounded. I am shaky and incredibly edgy. Now what everyone should be aware of is that everything that I was told this morning can be handled and my doc is great so I have a great deal of confidence in her. As four of my close family members have pointed out so kindly is that all of these issues are highly treatable. I have scripts for each issue and some basic instructions and additional testing I need to do before I see my beloved internist again. Having said that I am freaked out. I don't know too many 31 year-olds who have been through some of this crap. Right now I am on medicine to relieve my acid reflux, protect my heart muscle, relieve allergy symptoms (3 different ones), and an antibiotic to annihilate my sinus infection that refuses to pay rent. Plus I recently started a multi vitamin in an effort to do something in addition to give my body some little advantage. Now in my past life I have super sucked at taking medicine and anyone who has known me for awhile, knows that I try and then I get forgetful, and I mean REALLY forgetful.

I decided I felt fine awhile back and quit making any attempts to take my heart medication because that's what denial has done to me. With the mystery illness that I have had for the better part of this past year I suddenly scared myself into taking them. Now most would say that fear as a motivator is a poor choice. I just figured that fear was what was going to get me on the train and will power and dedication would keep me on. So here I am three (or four) months later and indeed I have been very faithful with few exceptions. Because like I said earlier taking my medication would automatically allow me to pass go and collect $200, or at least that's how my mind was working all of this time. I started religiously brushing my teeth (like my orthodontist would adore) because I found out that oral hygiene was very connected to heart health.

I also recently began eating far more organic food to try and rid my bodies of any crazy chemicals from pesticides. In addition to eating differently I made an action plan about my weight with regards to working out. I am holding myself accountable by paying a load of money for a personal trainer. I hate throwing away money, so I would need a really good reason to miss those appts. And part of the agreement with the trainer is to work out on my own so she will be checking in. Right now I would be seriously embarrassed in the first week if I already failed my early assignments.

BTW - Did I mention that I am also the person that thinks that everything can be reversed and worked with given some time? That translates into me saying I can fix everything that is wrong very quickly and easily. I just recently got the memo that changing really takes ALOT of work and dedication. I actually have to give up my comforts and seek out a new lifestyle. Sounds almost like fun, and I bet that parts of it will be. But what I also am learning is that life with medical issues is not all that it cracked up to be. It can be scary and unpredictable and unnerving. This whole thing makes me feel weak and somehow in all of it I know that I am strong. Whatever, and I mean whatever, the results from these latest tests have told me, the one thing that paperwork didn't mention was my will. I will not be beaten down for long...I am forever optimistic. It may take me a week or two to really wrap my brain around how I am feeling as I know the shock is wearing off now.

And funny enough I will be trying my best to not use the internet as a tool containing information regarding these tests and results. Why do I have a doctor if I think I can diagnose myself? It's like what I wrote in a previous post regarding my son, why would I sign him up for tumbling if I actually thought he could pull off a somersault??? What a waste of money that would have been. So clearly my insurance and my out-of-pocket money are buying something at this doc's office (and I don't mean her car or house). I am supposed to depend on her to lead me through these health issues as well as her staff. So tomorrow (or rather later today) I will be calling the nurse to ask her some additional questions so I don't drive myself crazier than I already am. I am hoping I don't come off as a crazed, anxious patient who is worrying unnecessarily. I want to know that there is some level of understanding on the other side of the telephone, which I am pretty sure there will be.

So in the meantime I will be visiting a nearby pharmacy tomorrow and seek out the three new medications I have to start and learn how to live with it. There are some interesting directions with the meds this time, so it will take some planning which has not been my strong suit in recent years. However, this has to be different. The entire issue has to be handled differently than I have done so in the past. It has to actually be taken care of and figured out and not stuffed in the back of the cabinet or closet waiting to be seen and heard. I will be taking this medicine and I will start loving it. Because these new meds just actually give me a new lease on life.

So now my eyes are tired enough that I am going to attempt to sleep. I hope there is some mercy tonight and I can just fall asleep quickly. Please God, pretty please with a cherry on top!!!

Tuesday, July 13, 2010

Purposeful living

I find it interesting to think that sometimes I am not really checked in when it comes to my life. I am not present so much of the time, whether it's because I am running on autopilot or because I am just reacting to the events of the day. Somewhere along the line I got pretty discouraged and quit planning. My guess is the medical stuff both in my life and those around me contributed to this as well as my general laziness. I love talking about planning and changing. I am SO incredibly good at it. The follow through is a different story. Like this blog for instance, I meant well when I started this a year ago and let's just say I never found time for it and consequently it got left in the dust like so many other things in my life.

Now I would be remiss to say that wonderful things never happen if I don't plan them. That is completely untrue. However, I would guess that a little more planning would go a long way. Plans such as financial planning, eating, exercising, biking, cleaning, reading, or doing just about any fun activity (i.e. picking blueberries, pumpkin farms, etc.) might just make life more purposeful. I have spent a great deal of time thinking and talking about the direction I want my life to take, and I have to say I am a little proud of myself. I have started to take steps to make things happen!

I said I wanted to ride the bikes, so we bought the helmets and the water bottles to begin this journey. I said I wanted to start exercising safely, so I bought new shoes, got a heart monitor, and I start training sessions with a personal trainer tomorrow. I wanted to start eating better and I have taken two trips to Whole Foods with another on the horizon tomorrow, and I have done quite a bit of research on the subject. I have wanted to get back into reading and I have read two books in the past month. We are currently reworking our budget to better suit our needs as well. While change doesn't happen overnight, I am definitely feeling the winds blowing in a different direction. Being more proactive vs. reactive makes a difference to me, a big one actually.

I will not just continue on floating along and hoping that I have enough of everything to make it through. I have plans for both myself and our family! There is a life I am meaning to live and its headed my direction...

Monday, July 12, 2010

Tired. Just plain tired.

I am tired. The kind of tired that you just want to lay your head back a little and close your eyes and head on into dreamland. I don't usually fall asleep sitting up, however today I could make an exception. I think it must be the three and a half hours of sleep plaguing me. Go figure. For the record, I did try very hard to get to sleep last night. Something was just keeping me up. :(

Somehow I have even been somewhat productive. I worked today, did a bunch of laundry, organized some more bills/paperwork, ran an errand for my Mom, and kept track of my dear son. I would say that dinner is seeming like a bit of a stretch today. Although let's be honest, most likely I would say the same thing over and over each night (sometimes for a different reason).

And now I must retire soon...

Wednesday, July 7, 2010

How does one apologize?

So what do you do when you need to apologize to someone in your life and you feel like the more time passes the harder it gets? I disappointed a friend recently and I feel horrible. All I want to do is pick up the phone and beg forgiveness but then I wonder the response will be. I have done odd things to my friends throughout my dealings with my depression and anxiety over the last 13 years, no question. And for the most part I have been completely forgiven (as far as I know). My friends have always accepted the whole person I am, faults and all. When I am anxious or upset I have a difficult time communicating and it weighs heavily on me.

I hate disappointing my friends. I really hope I end up being able to make amends with this friend and start feeling like I can pick up the phone. I have been told that I am a much nicer person since my work craziness ended, so I hope that stress is over. I was an absolute mess at the end of the site contest. I clocked in more than double the hours during the last few days of the contest and my hubby worked like a slave over the last week as well. Of course while my part ended and is back to normal, his job still has him incredibly tied up. I just pray for some courage and some level of forgiveness from the people who love me.

Monday, July 5, 2010

A New Leaf

This past weekend we started to make a set of house rules for our household. Nothing crazy, just ideas to make our home run more like we want it to from here on in. One of the rules is to only eat one dinner &/ one lunch out during a week's time. I am feeling more comfortable in the kitchen and work has calmed down, therefore we can handle this. Another rule is that we must go to the YMCA at least twice a week to take M swimming outside of his assigned lesson day. He needs the activity as much or more than we need it. Plus since I am starting personal training in about a week's time I now have to remember how to be more dedicated to learning a new lifestyle. Working out and exercising somehow have to become a part of my day, not a part I fit in, but rather a part of my day that I work around like sleeping, showering, or eating. It's been a battle to exercise for a long time. I have been afraid of injury or compromising my health and I have been lazy. Many times both.

I think I view working out as an embarrassment to be honest. It's me saying look at what I allowed to happen to myself over the last several years. How could anyone look at me and not judge? I certainly spend time reprimanding myself for my mistakes. At least I try not to do that as much as I used to do though. There is a realization that there will always be something to strive for in life. So, right now one of my focuses can be learning how to live a healthy lifestyle again. If I am unhealthy all of the time (which is what it feels like most of the time), then I will not be able to participate fully in what life has to offer me. There are many things I would still like to do in my lifetime, so if something doesn't change, many of those wishes will become unfulfilled.

So much to learn, so little time. :)