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Struggle for Peace

It’s been quite some time since I’ve written my blog.  Part of the reason is that things have been pretty much status quo with Dave’s health.  There hasn’t been a significant change that has inspired me to write.  I noticed that I didn’t write a single blog post in all of 2019, and I honestly had no idea it had been that long.  As I thought about it, I realized that I just had no motivation to write.  In fact, I had no motivation to do anything.  I didn’t read books, I didn’t particularly want to go out and do things, I didn’t really want to hang out with people, I watched mindless TV, and I often didn’t feel like taking a shower.  I went to work, and sat on the couch when I wasn’t at work.  I lost interest in cooking, didn’t particularly care what my house looked like, and really didn’t want to be bothered by anyone.  Then, I changed jobs and started working at a very high stress, high anxiety workplace.  I spent my time at home doing absolutely nothing because it made the time go by slower and then it felt as if I had a longer evening or weekend.  I dreaded going to work and felt a sense of torture every morning. I decided to leave and got a fantastic job that I am now really happy with.  But when I started that job, and for several months after, I had a lot of anxiety around going to work.  I felt like I had PTSD. I would drive home from my new job, listening to my favorite music, and cry.  I had to be careful not to cry too much, because I had to see the road.  I’d start thinking about all the things I constantly have to deal with and was feeling very alone. I was always angry and always exhausted.  It finally dawned on me that I wasn’t so much tired from lack of sleep (although I wasn’t sleeping well), I was tired from a lack of peace.  I don’t know how long it had been since I felt a sense of peace…at least 12 years. I was at the point where I wasn’t suicidal and did not want to hurt myself, but if I didn’t want to be here for my kids, I would have been okay with my life being over. That was how much I craved peace. My life had gotten to the point where it was clear my needs weren’t being met, and I was at the end of my rope. I was hopeless, and felt I had nothing to look forward to. Twelve years of a spousal illness, raising 3 kids, keeping a household going, and struggling financially, led me to this point.  One December day, it suddenly occurred to me that I was in a depression.  Nobody in my life had noticed I had changed and was struggling, but in all fairness, it wasn’t clear to me up to that point.  I’m also not a person who shows or shares my feelings easily.  I don’t want to burden other people. I decided I couldn’t live that way and it was up to me to do something for myself.  I made an appointment with a psychiatric APRN and got myself on an anti-depressant.

As a spousal caregiver, you struggle with a range of emotions all the time.  You feel empathetic, helpless, resentful, bitter, sad, tired, loyal, compassionate, hopeless, guilty, and there are days you wish it was over so you could have a life. The person you committed to spending your life with is not available to share that life in the way you both had hoped on your wedding day.  Dave has been sick for half of our marriage.  The dreams and goals we had are gone.  We take a day at a time.  Simply making plans for Saturday night is a challenge.  We’ve had to leave social gatherings numerous times because he was suddenly not feeling well.  Everyone is sympathetic to him, as am I, but people don’t realize how hard it is for the other spouse.  Chronic illness is torture for the patient, but it’s torture for the spouse to have to watch someone suffer every day, year after year.  It’s hard for the healthy spouse to essentially have to give up their life to be available to the sick person.  You are torn between the needs of the person you love, and your own needs.  People tell caregivers all the time that they need to do things to take care of themselves.  While that is true, it’s much easier said than done.  You just don’t get it if you aren’t in our shoes.

There are some people in my life who ask me what they can do to help me.  I usually say I don’t know, because I don’t.  Plus, I don’t want to burden anyone or put anyone out.  As I’ve gone through these dark few months, I realized that the biggest thing anyone can do to help a caregiver is to make it okay to share what is REALLY going on with them, the good, the bad and the ugly.  If you ask how they’re doing, make eye contact, really listen, and make them feel safe and especially not judged for how they feel.  Believe me, we judge ourselves more than anyone else does.  Although we are doing a good thing, we criticize ourselves for every negative feeling or thought we have.  We kill ourselves to make things okay for our families.  We do it out of love, and we know it’s hugely important.  We wouldn’t want anyone else to do what we are doing.

I’ve been on medication now for 4 months and it’s made a huge difference for me.  I still struggle at times with anxiety, and there are days that I still feel down.  But the hopeless feeling is gone, and I’m a little more positive that maybe someday life will be easier, and more enjoyable. If I didn’t have that hope, I could never get through this.  This quarantine that came out of the blue has been a serious blessing for me.  I’ve had time to read and do things, or just not do anything if I’m feeling lazy.  It’s been nice not to have to go anywhere or do anything.  I’ve finally felt the peace that I’ve been missing for so long.

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.