Tag Archive | medical

A Sliver of Light

Sometimes, when the darkness comes and you feel your world crumbling down around you, a sliver of light makes its way through the cracks of your life. The past month has been a huge struggle for me and my husband. Not only has he seemed to have gotten noticeably worse, but financial burdens have become overwhelming, our kids have had some personal struggles, and the pressure to remain strong and keep life “normal” for everyone has become harder for me. Then, on May 18th, my husband was brought to the ER by ambulance once again. He had been vomiting on and off for days, thought he was better, and then started all over again. We thought he was septic again. This was not a new thing for us…we had been down this road several times before.

But, this time was different. He went to his usual hospital, where they knew him and his history. They discovered he wasn’t septic, but possibly had a blocked intestine from his tumor growing and squeezing it shut. A doctor came into the room and said that she felt he would be better off going a few blocks away to Smilow Cancer Hospital. She felt he would be able to get tests over the weekend, and that there may be doctors there with more expertise. So, we agreed and he was transferred. It was one of the best decisions we’ve ever made regarding his treatment in the last 11 years. It changed the trajectory of his treatment and gave us some hope we haven’t had in years.

Dave stayed in the hospital for 5 days, and came out looking and feeling like his old self. The difference? He had a different doctor who decided that since his disease is essentially an overproduction of inflammation (in a very basic nutshell), that they should put him on steroids and see how he does. The result was nothing short of amazing. He felt better physically with less pain, and his head cleared and he was able to think more clearly. He was more awake. They released him on Tuesday, with a referral to a doctor who specializes in rare diseases. That doctor happened to be in the SAME practice as the doctor he has been seeing for the past 5 or 6 years. We have no idea why we were never told about him.

Last week, he had his first appointment with the new doctor and he has given us more hope in one visit than the other doctor has ever given us. The new doctor is already treating another patient with Erdheim-Chester Disease in the same practice. He studied under a doctor at Sloan-Kettering and a doctor in Boston who both have experience in treating ECD. He started my husband on a new medication, has a brand new plan for him, including monthly visits, scans, and testing for a gene mutation that could change the course of his treatment in a positive way. The hospital also gave him other resources to help him and the family. In 11 years, we never knew any of this existed. One trip to the hospital, for what we thought was just another hospital stay with some sort of infection, turned out to be a blessing in disguise. We had the right doctor at the first hospital who questioned his lack of current treatment, who sent him to a specialty hospital, who had the right doctor on staff to lead us to a completely different doctor with a much better plan.

Life is still a struggle, and the illness will always be there. We’ve watched as my husband slowly deteriorates, not knowing what to do or where to go. Just when you feel as if life has kicked you so hard that you don’t want to get back up, the right people, in the right place, at the right time, enter your life. And everything changes. We don’t know yet what the outcome of all of this will ultimately be, but we feel hopeful for the first time in a long time. Sometimes, that’s all you need to get you through.

Exhaustion

Apr4

Exhaustion. It can hit out of the blue. You think you’re doing well and handling everything, and you have a hopeful outlook. It’s not always physical exhaustion. It can be mental or emotional exhaustion. But, mental or emotional exhaustion definitely adds to the physical exhaustion. That’s where I am this week. I’m mentally exhausted. I’m tired of struggling all the time. I struggle with a busy schedule…work, managing a household, taking care of kids, being available to my husband for his dialysis or any other medical needs he has. I struggle with worry EVERY SINGLE MONTH on how I’m going to pay everything and still be able to buy a little extra, or do something fun, or be able to pay for something my kids need or want.

Home dialysis was supposed to make things easier for “us.” They told us the machine is the size of a suitcase, and we can take it anywhere, even on vacation. They didn’t tell us we would need to lug 5 large bags of fluid for each day of dialysis (25 bags for a week), saline IV bags, and a gazillion medical supplies with us. They told us you do dialysis more frequently, but for less time. We do dialysis 5 nights a week for 2 1/2 to 3 hours once he is actually hooked up and dialyzing. It doesn’t include set-up time and clean-up time. It ends up more like 5 hours a night. That’s a lot. They said he can do it on his own, but it turns out, he has to have someone here with him to help him hook up and unhook, or be here in case of an emergency. It’s not easier at all. It’s harder.

I’m so tired of worrying about money. I get the summers off, but I end up a stressed out wreck because I don’t get paid when I don’t work. I’ve been applying for other full time jobs that are year round, even though it will mean I will have to leave a job of 9 years that I love. I considered finding something part time that I could do during the school year to supplement my income, and pick up hours in the summer to maybe enjoy them without worrying. But, because of dialysis 5 nights a week, I don’t know how it’s possible to work part time during the school year, after work. There just isn’t enough time in the week.

I’m tired of saying no to things that are important to my kids because I can’t afford them or I don’t have the time or ability to be both at home, and out. People will say, “you don’t have to give them everything they ask for.” My answer to that is that they don’t ask for much, and when they do ask, it’s very important to them, or it’s a life event that they shouldn’t have to miss. I hate that there are times they have to miss out because I’m not available or can’t afford something. I hate struggling to figure out where the extra money is going to come from. I hate that I am the only one who worries about it. It really sucks to keep disappointing your child, when you know you are struggling yourself to accept all of this.

I’m tired of having to keep it all to myself because the person that I’ve always figured this stuff out with is sick. He’s sleepy, he’s medicated, his brain is often foggy. And there isn’t much he can do. He is exhausted, too. His body is failing him, he’s in constant pain, he’s sleep deprived, he’s forgetful. He doesn’t have a solution to any of this. I’m tired of handling it all alone. I have to always keep him and his illness in mind, otherwise I would be overcome by resentment and hopelessness. I keep him in mind because he has enough to worry about. He didn’t ask for this any more than I did. He has it worse. My exhaustion is nothing compared to his.

This exhaustion has come and gone many times in the last 9 years since he got sick. We always rally, we always make it through, we always survive. It’s a matter of plugging along and pushing through. We have no other choice.

When Is Enough, Enough?

Mar30

I walked in the door at 7:30 tonight after being out since 8:15 this morning. My day consisted of working with kindergarteners for 7 hours, picking my daughter up from track practice, driving 40 minutes to her voice lesson and 40 minutes home, and a stop for Chinese food. I blew off a meeting because I had to get home at a decent hour to help my husband, and I was tired. Like almost every night, I was greeted by dishes in the sink, dirty floors, dusty pet hair covered surfaces, laundry piled on the couch, laundry in the bathroom, laundry in the laundry room. Did I mention there was laundry? The bathroom is a mess, even though I clean it at least once, if not twice, a week. There is also the usual clutter of a lived-in household.

I blew off cooking dinner tonight because if I had to make a meal, we would have been eating at 9 p.m. Did I mention I was tired? So, take-out it was. Again. I was out of the house and on the go for almost 12 hours today and had no desire to cook. As I sat and ate my Chinese food , I looked around and started criticizing myself for my obvious incompetence in running a household. What kind of wife and mother lets her home look like this? How dare I have this amount of laundry all over? How dare I allow my floors to look like crap all the time? It’s incredibly embarrassing every single time someone walks into our home. I wonder what they must think of me. I don’t like it when people come over. They probably think I’m lazy. There is no excuse to not keep up with it all. Even though I try to clean it every week, it never looks the way I like it, let alone the way guests would expect to see it. It looks good for a day at most, and then it’s a mess again. I don’t have time to make it look incredible, or even presentable most of the time.

I look forward to weekends, but then I spend them grocery shopping, cleaning what I can, driving kids around, and hopefully catching up on some of the sleep I inevitably missed during the week. It’s a rare weekend that I get to do something just for the fun of it. Sitting and reading a book can be a challenge. I figure I don’t deserve it anyway, because I can’t even get my simple chores done.

I’ve also been trying to find a part time job to supplement my income during the school year, and be able to work in the summer when I don’t get paid from my regular job. I can make it work. I can work a couple of evenings, and maybe one weekend day, while holding my full time job. I mean, it’ll take some of the stress off, right? I can do this. No excuses.

Meanwhile, my husband sat in his recliner. No, he isn’t lazy. Far from it. He was hooked up to the dialysis machine that keeps him alive. He does this 5 nights a week for several hours. He can’t be alone when he is hooked up to the machine. I have to be here with him, or another adult has to be with him, in case something happens or he needs something. I figure that should give me the time to clean, do laundry, and cook, since I’m home anyway, right? No excuses. There is no excuse. There is no reason that I shouldn’t be getting everything done every night.

These are the things I say to myself all the time. Then tonight, as I sat here, I heard that sound a record makes when the needle scratches it. You know the sound, if you are old enough. Now, I didn’t really hear that sound…it was in my head. But I noticed the negative chatter in my head and stopped myself. What is wrong with me? I never stop, and yet it still isn’t good enough for me. The house isn’t clean enough, I don’t cook enough, I don’t keep up with the laundry, I’m not giving enough time/money/attention/experiences to my kids, I’m not giving enough time/attention to my husband, I’m not making enough money, so I can’t provide enough. I also tear myself apart because of what other people might think. They’ll think I’m lazy, or dirty, or simply not good enough. I make it seem like I can handle it all just fine, but I really can’t. Why is that not okay?

Honestly, I don’t know how to fix it all. I’m trying to accept that this is my life for now. My house will be messy, the laundry won’t be completely done, we will eat take out more than we should, and if other people come over, they will have to tolerate the mess. People will always judge what they haven’t lived. I’m judging it, and I live it. I’m just trying to get myself to the point where I can say “enough is enough,” and be okay with just doing the best I can for now.

The Noose

Jun24

In November of 2007, I returned to the workforce after staying home with my three kids for ten years. My youngest child was in Kindergarten, and I needed something beyond the mommy and household stuff. I also wanted to start contributing financially. We had decided to sacrifice lots of things, especially money and the “extras” it can buy, so I could be home with our kids. It was extremely important to us. Two weeks after I returned to work, my husband’s tumor was discovered. In addition to the toll on my husband’s health and the incredible stress it placed on the family emotionally, it began to destroy any hopes we had of financial freedom. Over the past almost 7 years, any hope of financial freedom is gone, and has been replaced with the dream of just being able to be comfortable every month. By comfortable, I mean that the mortgage and monthly bills are paid, we have enough food on the table, and perhaps we can do a few fun things during the month. Our hopes of providing college educations to our children, or going on great vacations, or giving our daughters big, beautiful weddings are gone. I don’t know if I will ever be able to retire.

We are in survival mode and have been every single month since my husband stopped working in October of 2009. It’s a way of life for us. It is possibly the absolute most stressful part of my life. It’s like constantly dangling from a noose, trying to hold yourself up so you don’t suffocate. In addition to raising three kids, managing a household, and dealing with an ill husband, I work to try to make ends meet. Medical retirement and disability payments barely cover the mortgage and food. There have been times we considered shopping at the food bank. We get energy assistance so our electricity doesn’t get shut off in the winter. Our kids qualify for free or reduced lunch. We didn’t pay our mortgage for 6 months, and still could barely make it. We get free stuff for our household from the dump. When we have a little extra, we do something fun so our kids don’t have to miss out all the time. We do our best to give them things, and as a result we sacrifice what we want, or live with that much more stress. They only get one childhood, and I refuse to make them feel “poor,” or let them feel as if they are missing out.

My husband and I have both worked since we were about 12 years old. We both have a good work ethic, and we do what we need to do to provide for our family. We always paid our bills, and were responsible with our money. Then the illness took it all away. I have sat around dinner tables where people talked about how “irresponsible” people are who “live beyond their means” or don’t “keep up with their mortgage.” They criticize people who need help with mortgage programs, or who “live off the government.” Comments are made by people who have no idea what it’s like to be in that situation. People judge with no regard to the facts. They judge people who would do anything to be healthy and provide for their family. Living this way isn’t laziness or irresponsibility.

We commonly hear comments from friends or family members who complain about how they struggle or how upset they are over some financial stress they are having. These same people are hiring people to clean their houses, or are taking their kids out to eat or to some fun event several times a week. They are planning multiple vacations every year, and buying new cars. I even had one person tell me they were a little upset that they are now making so much money that they are in a new tax bracket and no longer qualify for the child tax credit. Their tax refund was going to be less this year. I sat there like an asshole and gave sympathy, when what I really wanted to say was that I would literally give one of my arms to be in the next tax bracket, rather than struggling every damn day of my life. I had just told her that we qualified for a new child tax credit because we are low income. These same people know how hard it is for us. Sort of.

There is a shame that goes along with the way we are living. I don’t know why. Shame implies that we have done something wrong. We haven’t. We’ve tried to do everything right for ourselves and for our children. I never, ever share our true financial story with anyone. We pretend it isn’t as bad as it is. People have some idea, but they don’t know what it’s really like. It’s exhausting and hopeless and depressing and frustrating. The stress leaves me teetering at the edge sometimes. Yet, somehow, we always make it through. We are lucky to have some family and friends who have been Godsends at times. There are times we wouldn’t have made it without them. The struggle is never ending, and sometimes people get tired of helping. We don’t know if we will ever be able to repay people for what they’ve done to help us. There is no end in sight to the struggle. We try to pay it forward and help other people when we can.

People talk openly about the physical, emotional and psychological effects of chronic illness on themselves and their families. But when it comes to money, people keep it to themselves. Yet, I suspect it’s one of the most detrimental aspects of living with chronic illness for everyone involved. It is by far the most stressful part of my life and affects my mood, stress level, health and outlook on life every single day. The nonchalant comments from other people make it even worse. I don’t know what the solution is, but putting it out there without shame is a good start.