My Normal.

It's been 5 years since my 3rd open-heart surgery and I've been thinking a lot about the importance of sharing with younger Truncus patients what normal might look like for them in their 40's. I also feel compelled to educate people outside, or on the periphery of, the CHD community about the long-term effects of living with a CHD. I turned 45 this year and was recently told by a geneticist that I am the oldest Truncus patient she had ever met. There aren't very many of us over 40 and no one really knows how our repaired hearts will hold up over time. It's scary not knowing what the future holds, especially since we have come to expect one unavoidable surgery after another. As the years go by it becomes harder to recover from surgeries and surgical procedures. For many of us, chronic and worsening PTSD becomes more and more of a problem in our daily lives and, additionally, our lists of diagnosed physical issues continue to grow. Despite all of this, we fight to get the most we can out of life. Only the people who are closest to us really know how much we struggle. I would like to change that by increasing understanding and spreading awareness about what life is really like at my age with a CHD.

In addition to my heart issues I also live with Fibromyalgia, Irritable Bowel Syndrome, Interstitial Cystitis, Bilateral TMJ Disorder, Hypothyroidism, PTSD, nerve damage and ribcage pain. Exhaustion is my constant companion. I am literally always tired, to varying degrees. From the moment I wake up in the morning and throughout all my days. I have learned to push that exhaustion aside and I often keep going until my brain and body start to shut down. At that point I usually end up having to spend anywhere from a day to 3 or 4 days doing as little as possible while I recover. I also live with pain. Distracting myself from it has become an ingrained habit, until it gets too bad to ignore, at which point I have to rest and simply wait to feel better again. The muscle and joint pain from Fibromyalgia, the nerve pain from surgical trauma, my exhaustion, and some of my other issues, are all exacerbated by stress. Unfortunately, I have become increasingly sensitive to stress as I've gotten older. The Fibro symptoms are also made worse by rainy weather. All of this has made it difficult to function as an independent individual. I am not able to support myself financially and there are so many things I'd love to do but can't. There are days when I can sort of keep up with normal activities, such as socializing, school and chores, but I also have days when I feel so weak and exhausted that just lifting my arms to comb my hair is almost painfully hard to do. I am currently attending CSUS part-time and hope to complete a BA in Psychology within the next 2 years, but I don't know if I'll ever be well enough to work the amount of hours I would need to in order to support myself. Going to school part-time is all I can handle. Walking to and from my classes on campus is challenging. I struggle with shortness of breath, fatigue, and pain while trying to get around.  Paying attention in class and doing  homework can be grueling too, but the mental stimulation I get from going to school means a great deal to me and I feel that it's worth the effort.

 In addition to the aforementioned symptoms I am also dealing with side-effects of some of the medications I take. The most problematic of these is all the damn peeing that comes with daily use of diuretics. Because of permanent damage to my heart, resulting in Congestive Heart Failure, I will need to take diuretics for the rest of my life. I can never be far from a bathroom for long and that can be frustrating to deal with. I also have to follow a low sodium diet and make an effort to restrict my fluid intake. Besides the diuretics, I take several other medications, including 12-14 potassium pills a day which can cause nausea and stomach cramps. 

All these difficulties might be painting a rather grim picture of my life at this time, but it's not all pain and struggle. I have close friends and family who mean the world to me, I love spending time with my kid, I manage to enjoy school much of the time and I am often content or even happy. I have learned to take my challenges in stride, for the most part. Sure, there are bad days, sometimes way too many, but the good days make life worth living. It's also important to remember that, while Truncus patients have a lot in common our bodies are still all somewhat different and not everyone with Truncus will be facing the issues I live with when they get to their 40's. I hope that the future keeps getting brighter for all of us as modern medicine advances. In the present, my greatest coping skill is gratitude, for everything I've been able to do in the past and everything I am still able to do today. I count my blessings over and over and consider myself lucky to have them.





Let's talk about support, or the lack thereof.

I recently underwent my 14th surgery, to remove my pesky gallbladder. The person who is usually my rock and main support,  my (ex) mother-in-law, was to be vacationing in Canada at the time. I considered moving the date up, but decided to try a new approach to securing the support I need. Having been through so many surgeries over the years, often without adequate support, "who has or hasn't been there for me" is a difficult issue that brings up a lot of past traumas. Here are the lessons I have learned about what is realistic to hope for from friends and family, and why attempts at caregiving often bring out the worst in so many people.
This time around I decided to set up an event page titled Marijani's Support Team for Gallbladder Surgery, and this is how I worded my request:
"Hi everyone! Meg will be in Canada when I have gallbladder surgery and I am concerned about not having enough support. Patients who have family and friends in the room with them, most of the time, get much better care. I'm also anxious about being there alone because of my PTSD, brought on by a lifetime of bad experiences in hospitals. So, if you can visit and help keep and eye on me I would appreciate it greatly. If the surgery is done laparoscopically I'll go home the next day, if not, I'll be there 3 or 4 days. This can be a place for you guys to coordinate and stay updated. All surgeries are somewhat higher risk for me and I want to be prepared in case of complications. If you are on this list it's because I love and trust you. Thank you in advance, also if you're unable to visit I totally understand, everyone has busy lives."
I  told everyone who volunteered to help that it was important that no one person took on more than they could handle, the idea was to spread the caregiving out amongst all of them. This seemed like a smart approach to organizing and securing the care I would need, both in the hospital and back in my apt where I live by myself. Unfortunately, things did not go as planned. One friend volunteered to take on way more than anyone else and I asked her if she was sure she could handle all of it, but she assured me that she had set a few days aside and could focus on helping me get through this ordeal. In hindsight, I should have been wary, but at the time I was simply grateful. I told her several times what a great friend she is and how much I appreciated her help. Sadly, it quickly became clear that she had no idea what she had signed up for. She became overwhelmed when her very unrealistic ideas about caregiving in the hospital were obliterated by the reality of constant interruptions by nurses, stress, tedious hours of sitting around waiting, and sleep deprivation. She instantly made it all about her. Her exhaustion, her stress, and her overall discomfort. Instead of simply admitting that she had taken on way more than she could handle and then coordinating with others to cover the most necessary care, she  lashed out at me, saying all kinds of hurtful things. When it became clear how much she had hurt my feelings she told me that she hadn't really meant those insults and that I shouldn't take them so personally.  So, for anyone who hasn't had any surgery, and/or hasn't taken care of someone who had surgery; when people are recovering from being cut open they tend do be very emotional and easily hurt. That is normal and perfectly understandable! To attack someone in that position and then tell them not to take it personally is beyond outrageous. In short, I had to ask her to leave and an old friend stepped up to take her place. Some people want to think of themselves as great caregivers, but in reality they are quick to make it all about them instead of focusing on providing care and support. If you have committed to being there for someone in a caregiving capacity, but are feeling that you can no longer be caring and supportive the right thing to do is to leave, politely, and without making drama. Don't make the situation worse for someone who is already in pain and feeling very vulnerable.
The lesson I have learned from this is to get the bulk of my support from the small circle of people who have known me for many years, and have seen me go through one surgery after another. I still believe that no one person should ever have to shoulder all the caregiving for another, and I do have a few people who I trust and can count on for some part of what is usually needed. When someone new comes along and volunteers to take on a whole lot, don't let them. Insist on spreading the caregiving around. New people can be included in the support team, but only bit by bit, slowly, over time.
I have also learned over the years that the people who are able to help under those circumstances, without making it about them, are worth their weight in gold. I tell them often how much I appreciate them. It doesn't matter how much someone is able to help, what matters is whether they are able to do so consistently and with a truly caring and supportive attitude. If someone can only do one thing, but I can count on that person to show up and do that one thing at stressful and difficult times then that means a million times more than another person showing up with an unkind attitude.
Having to rely on others for help around surgeries has been challenging. There have been times when I was treated abusively by people who were supposed to give me care and support. They have to live with themselves, which is punishment enough. On the other hand, the people who have done a good job, or even a half-way decent job, at caring for me when I most needed help deserve my deepest gratitude. Unfortunately, there are some people who can't ever be thanked enough, that is their problem. Be sure you have given them a sincere thank you, and then let it go. Don't ever look to that person for help again.
Lastly, there are always people around, on the periphery, who will try to make it about them. Keep them at a distance. Protect your inner circle of calm and sanity. The only people who are allowed in the inner circle of support are those who have shown that they can truly be supportive without drama or selfishness. When I am able to I work at being that kind of support person for others. I wish to give back, to be of help to others in turn. Learning how to give and receive support graciously deepens our experience as human beings. While living with a CHD is often a lonely path it has taught me the importance of asking for and receiving help from others, plus the ability to apply what I have learned to being a better caregiver and a better person.

Back to school, again.

At 44 I find myself once again back in college. I have been working on completing a Bachelors degree for many years and have returned to CSUS this semester after an eleven year break. During that time I filed for Disability, lived with congestive heart failure, fibromyalgia and heart rhythm problems, underwent 4 cardiac caths, my third open-heart surgery and a hysterectomy.  I also parented a teenager and became an empty-nester. I have been busy, but I have at times felt that I haven't been busy enough.
Those of us who are chronically ill still want to feel that we are leading productive lives. Unfortunately, society's standards for what is considered to be a productive and successful life is at each milestone often more than what we can keep up with. Many of us fall behind and for me this meant a deep sense of failure. Intellectually I understand that measuring my accomplishments against those of able bodied people isn't a fair comparison, but that fact seems to be lost on many people, including some of my close relatives. Unfair judgements and unrealistic expectations regarding how much we can and should be doing, by people who really have little or no clue about what we endure, are sadly all too common. Many of my fellow CHDers, who aren't able to live normal lives due to their symptoms have been deeply hurt by these kinds of judgements.
Criticism and judgements from others are hurtful and unkind, but what I believed about myself was even more damaging. To have thought that I didn't have what it takes to graduate from college and that I might as well accept my status as college drop-out was very painful. It plunged me into depression and years of soul searching. I will likely always have to deal with some disappointments due to my physical limitations, but what I eventually realized is that a college degree is something I truly want for myself and that when it comes to this one thing I should just keep trying for as long as I have any energy at all.  Not to prove to everyone that I'm smart, or to meet society's standards of success, but because it would make me feel proud of myself for doing something that makes me happy. I love being in college, I thrive in that environment and ultimately I want to be doing this because it brings me joy.  I am committed to sticking with it even if it's the last thing I do and even if I have to go to school online from bed. I am doing this for me and I am willing to sacrifice a great deal in order to continue for as long as I am at all physically able.
We have to live for ourselves. CHDers, and everyone struggling with chronic health problems, we have to keep working at letting go of all the expectations others have placed on us. For those of us who have lived through multiple open-heart surgeries and years of invasive interventions, the truth is that we have accomplished a great deal. We are warriors and have so much to be proud of. While uninformed judgements might always sting a bit, we can learn not to let them tear us down. We have fought hard to be here. Let's celebrate our miraculous lives by finding and doing the things that bring us lasting joy.