Below is something I wrote a while back concerning the illnesses my husband and I have and how they affect our lives. As I was re-reading it the other day I realized it applies as much to addiction as it does to the disabilities written about. The main thing is to read it realizing that although we may have been dealt a bad hand in life and cannot control the things that happen to us. What we do have power over is how we react to life's events. It is meant to be a story of hope and inspiration and just wanted to share it with some of the people who need hope and inspiration to live just as much as they need food and water.
The Good, The Bad, & The Ugly:
Just Don’t Forget the Hope
The Good
Craig and I met while we were both serving on the same ship in the Navy. We hit it off right away but each had heard rumors as to the other one’s unavailability so we were lucky enough to have some time to get to know each other before we ever dated. By the time we realized the rumors were just that and that we were both available, in fact we had become great friends. Also, as soon as Craig realized I was ‘free’ he immediately asked me out and of course I immediately said yes.
Because we were already good friends and knew each other very well it wasn’t exactly a long courtship. We were married within a year, I left the Navy, and we had two unexpected but absolutely wonderful children. The first few years were great. Sure we struggled for money at times but we were a happy family. Craig stayed in the navy hoping to finish his 20 years and retire and I worked my way up from a server to a manager with Applebee’s.
During these years we took the kids to the beach whenever we could, we’d get together with friends to play cards, grill out, go down to the waterfront for Friday Night Concerts in the Park, just about anything we could find that was good, clean fun; it seemed as if we were always going somewhere and having fun. Then one day something happened to Craig and I was called and asked to come to Portsmouth Naval Hospital where he had been taken by ambulance.
The Bad
Nobody at the hospital new for sure what was happening. I was told he could have hit his head and have a concussion all the way up to he may have had a stroke. I was devastated. They wouldn’t let me see him just yet, my best friend was home watching our children, and I had no family in Norfolk, VA. I was lost, and worried, and confused, and could only imagine what he must be going through.
I was finally allowed to see him; I was finally feeling a little relieved. The relief was short lived however when I noticed he could barely move to hug me and his words were so slurred I couldn’t understand a word he was trying to say. The doctors had by this time apparently ruled out stroke and listed his condition as serious but stable. I never understood the stable part; I guess it was because he was maintaining good vital signs. Anyway, they performed several more tests throughout the course of the day and his symptoms began to gradually subside. They still had no idea what had caused his symptoms to come on so suddenly and then to go away almost as quick but they said there was no reason to keep him and they made him an appointment with a neurologist and we went home.
Over the course of the next few months he had flare-ups of these same symptoms although none as severe as the day he was taken to the ER. He saw the neurologist, several times in fact, and they ran just about every single test they could on him. It finally came down to a combination of things such as the various and unpredictable symptoms, a spinal tap, a couple of MRI’s, and over a year of seeing this neurologist but we finally got a diagnosis: Relapsing-Remitting Primary Progressive Multiple Sclerosis or just MS for short. (I still think the navy doc knew it was MS but not what form so he included whatever words he could think of in the diagnosis). I don’t remember all of the exact details of what we did next; we were both in a haze. Now, Craig knew more than the average bear when it came to MS because his older sister has it. Me on the other hand, I knew almost zero.
After I got Craig home that afternoon, I went to the library and picked up just about every book I could find on MS. Between the brochures I’d gotten at the doctor’s office and the books I was up all night trying to learn as much as I could about this disease. I was afraid to talk with his sister about it. In fact, I tried to block out the fact that she even had it. You see at the time she was still in her 30’s and already wheelchair-bound. If I admitted that she and Craig had the same thing then I would have to face the fact that his may get that severe as well and I was nowhere near ready to face that.
So, we learned what we could about the disease. Craig did his best coping with the erratic symptoms. I did my best to help him and continue to keep things going along at home as normal as possible. Sometimes we talked about it, sometimes we got mad about it together, many times we just held each other and life went on.
About two years after his diagnosis, Craig had an attack that landed him in the hospitable on IV steroids for five or six days. He lost the sight in his right eye during that one and it has never come back. Eventually they allowed him to retire with full benefits; he had almost 19 years in anyway. We decided to move close to my family in case we needed any help – I never admitted it but that first time in the ER, I felt so alone and scared that I never wanted to go through that again if I could help it.
So we moved to a small town in Kentucky and went about our lives. I was still managing Applebee’s and Craig pretty much was Mr. Mom. He continued and does continue to have flare-ups, attacks, etc. Occasionally he requires IV steroids but those are done by home healthcare now. Considering how sick he had been and could be again at the drop of a hat we’ve felt pretty lucky. We certainly didn’t let the disease control our lives; many times it was like it wasn’t even there.
The Ugly
Then about seven years after Craig had retired and we had moved and about 10 years since he had been diagnosed with the MS, I got sick. I think the first thing I noticed was the pain in my hips, it came and went and for a while I simply attributed it to being on my feet so many hours a day. Then the fatigue hit and I was falling asleep driving to and from work. Our primary care doctor did an exam and some x-rays and referred me to a rheumatologist. Within six months I was diagnosed with rheumatoid arthritis (RA), fibromyalgia, and hypothyroidism. My RA was severe and extremely progressive from the start. I was forced to quit work and file for disability benefits myself. Within nine months of diagnosis, I was wheelchair-bound.
Craig and I felt like we were back on that roller-coaster of emotions we rode when he was diagnosed. Our kids were old enough by this time to help out around the house and Craig, while still experiencing symptoms, sometimes severe, was at least able to stay out of the hospital and remain capable of walking.
Life is so random and coincidental that sometimes we just have to laugh about it. I mean here two healthy young people meet, marry, have kids, and they both end up with autoimmune diseases with very similar symptoms and absolutely no predictability when any or all of these symptoms may flare-up. We’ve each, together and alone, have thought we can’t take it anymore. But what are you going to do? We have two kids, family who love us, and perhaps most important we have each other. This brings me to:
Just Don’t Forget the Hope
“I wept because I had no shoes, until I saw a man who had no feet.” Persian proverb
This is the point at which the person you’ve been talking with (who tries but really has no idea how bad things can get and how lonely it is possible to feel) begins to say things like “…there are new medical advances everyday…” or “I just read this article about a new…”, I could go on and on here but you get the idea. They mean well, these people but if you are relying on them, or anyone else besides yourself to keep your hope alive than it will die. In one way Craig and I are lucky, because we both have similar autoimmune diseases we can talk to each other without sympathy or pity. But even he and I have to keep looking inside.
The hope I am talking about is the kind of hope that keeps me going mentally; it’s the kind of hope that sees to it I get up every morning, brush my teeth, comb my hair, and get dressed whether I plan to leave the house that day or not. Maybe hope is the wrong word but I could not think of a better one to describe why I choose to continue to actively live my life and be involved in the lives of those I love.
Here are just some of the things I hope for, maybe this will help you:
Ø health & happiness for my children
Ø to be able to enjoy my future grandchildren with their grandfather
Ø that maybe some of my medical/health-related experiences can help someone else
Ø better health/less flare-ups for my husband
Ø that our children have a much easier adulthood than they did childhood, they deserve it
Ø that I will never forget all I have to be grateful for
Ø That I will never allow myself to lose hope.