Learning Limitations

Posted on 05/01/2013 by Caren Rugg

My body has begun a full rejection of the workload it’s been put through over the past couple of weeks. I’m starting to realize the hard way I may have to do things a little differently in the future…and I’m not liking it very much.

Last year we went straight from winter to an unusually dry summer, and it was an incredibly difficult year to grow much outside. We lost some trees as well as some perennials. This year has been a bit of a late spring, but it’s been more springlike than in several past seasons with rain and cooler temperatures. As a result, I’ve taken on some extensive outdoor projects including moving and rearranging all of the rocks (big ones…heavy ones….dirty ones) out of the big rock garden, and some brick work. I’ve been digging and stooping and bending and pulling and hauling and my body has stopped in defiance to the physical stress it’s been subjected to the past couple of weeks. I’m reluctantly accepting I may have limitations.

Three years before Terry’s health issues began I was diagnosed with Rheumatoid Arthritis. Most people hear the arthritis part of the diagnosis and assume it’s just another version of sore and inflamed joints, like Osteoarthritis, which I also have. But it’s so much more than achy joints, and when I’ve pushed my limits my body is in full control of whether I can move or not. In most relationships, a person with RA usually gets preference for the easy side of things, as stress and physical demands can set off a flare of symptoms. When the other person in that relationship has life threatening events happening on a regular basis, however, RA takes a back seat.

Rheumatoid Arthritis in an autoimmune disease. My body is literally fighting against itself, with my immune system in constant hyper overdrive. It’s a disease that causes inflammation throughout the entire body, and as a result impacts heart and other organs’ function and abilities. It attacks the fluid in the joints of my fingers and feet and knees and elbows, treating it as a foreign substance, and dries out the natural lubrication in my eyes. RA is a progressive and degenerative disease and the most people can usually hope for is to not have any further damage. It cannot be reversed. The medications I must take destroy my stomach and cause vomiting and nausea and potential damage to my liver. When I started treatment, the first drug utilized began its existence as a chemotherapy. There are literally days when I wonder whether the disease or the treatment causes me more problems. It’s a pointless debate to have because without the drugs I take to control this disease I would probably not have the ability to get out of bed.

I’ve tried not to let my diagnosis be the defining issue about who I am. I know I’ll never be a runner but that’s alright. I can ride my bike. I can still walk well (shoes are an incredibly important investment when you have problems with your feet!) so I park away from where I go and walk it in and out. I know my feet will never look good again, but they still work, so I’ll keep using them. Part of why I’m suffering now is because there’s a fine line between not doing enough and doing too much. When you’re stiff and sore the natural inclination is to not move and let it feel better, but the action that actually helps is to keep moving and keep loosened up. Well, I’ve kept moving but I didn’t stop when my body was telling me enough, and I’m paying for it big time.

Terry was able to help me two nights when I’ve felt the worse. On Monday, everything hurt, even taking a shower. He fixed dinner so I could let my body start to recuperate. On Tuesday, after not working outside but working hard inside, my left shoulder began to freeze up and hurt. By 5:15 in the morning the next day after not being able to sleep at all, he got me a heating pad and ibuprofen. None of those actions were major, but they were things I could not do for myself when I needed help. I’ve been so focused on Terry and his needs over the past 13 years that it’s been easy to ignore my own physical situation. Since I know the likelihood of him being there to help me in the future is slim to nothing, it really caused me to start thinking of my own future when I’m alone.

Will I want the demands and pressures of maintaining a yard and all the work that goes into it? Doubtful. Will I want a large house that takes a lot of maintenance and work to keep it up? Definitely not. Will I be willing to accept help from those who want to help me? I hope so…but being independent and a caregiver for so long makes it hard for me to count on others. Maybe in the near future a cure for this debilitating disease will be discovered and this whole discussion will become moot. I can only hope.

For now, I’m going to be grateful for the cold front moving in bringing rain, so I can stop looking out the windows at my unfinished projects I’ve had to temporarily abandon. I’m going to give the next couple of days to getting my mobility back. And I’m going to listen when my body says it’s had enough. We are the best protectors of our own health if we simply listen to ourselves. For now, I’m going to try listening a little harder. My future depends on it.

148e502789b3097660aadad2d536da0c

Doing For Others As We’d Like Done For Us

Posted on 04/05/2013 by Caren Rugg

Terry and his sister, Carol, and their mother, Ethel.

Terry is nine years older than I, and his mother was already a college graduate and 30 years old when she had him. My grandmother and mother had both married young, and my mother and I were each firstborn children. As a result, my grandmother is only two years older than my mother-in-law. My mother is spry and healthy, and doing everything she wants. My husband’s mother spent her lifetime active and physically engaged, and is now hitting that stage in her life where we’re noticing the changes.

I’ve joked to Terry that he took the lyrics of the song “I want a girl, just like the girl, that married dear old dad!” to heart because Ethel and I are both strong willed and opinionated women who are the dominant force in our families. She has had an incredible life, and has influenced more people in general, and young women in particular, than she will probably ever know.

As a high school science teacher, she shared of her love of science, and rocks, and learning. She was instrumental in getting girls’ athletic teams established at the high school, and lobbied on behalf of the girls to get permission for them to wear pantsuits. She was a force of nature to be reckoned with when women were supposed to meekly stand by.

She’s been an independent, free thinking woman, long before it was fashionable. When I had my daughter I was enrolled in graduate school, and rather than be critical I wasn’t at home with my new baby, she drove 35 miles once a week to babysit. She felt women should be able to be self sufficient, and I appreciated that more than she knows. Her fierce inclination to control all aspects of her life is a real reason she has remained as independent as she has. Even getting her grass mowed was her domain, and she climbed onto her riding mower until she was 90.

Knowing her as I have, it makes seeing the slowing down and inevitable dependence that much harder. When Carol brought her over for Easter the same week she took a fall at home, I was not prepared for how she looked. Hitting her forehead on the wall as she fell caused bruising up and down both sides of her face. Not only did her face look completely bruised, but she seemed frailer and more unsure of herself.

I wanted to make sure she was comfortable while she was here, and she kept commenting about how well she had been treated by her family. It doesn’t seem like any effort to fuss over her, but we aren’t there every day like Carol is, to help her. I think we all feel fortunate that she has been able to be so independent for so much of her life. She was physically active every day, and that is what kept her going as long as she did. Now that she is older and slowing down, it only seems right to do all we can to make sure she’s comfortable, happy, and more important with each passing day, safe.

So when she’s around, I want to try to do what we can to treat her well and make sure she has everything she needs. I know it sounds pretty simple, but I treat her the way I hope I’m treated when I’m 92. I’d like respect for bringing the lives I did into this world as a mother and grandmother; I’d like the joy of being included in family events; and I’d like to be surrounded by those who love me and want the best for me. That doesn’t sound like much to me!

507a8e329549abd43eb77489f60a1b8b

Appreciating the Problems You Know

Posted on 03/13/2013 by Caren Rugg

A friend of mine from high school has come over to the house a couple of times, and has the interesting side effect of causing us to appreciate the situation we live with and know. He’s a paraplegic in a wheelchair, and the physical daily struggles he endures far outweigh what we experience. He was divorced before his physical problems began, so he’s gone through all of his hardship on his own. To live the life he’s living would be tough enough, but to do it alone is heartbreaking looking in from the outside.

I don’t ever dwell in the land of the pity party, because I know all too well how much worse things could be for us. At a minimum, Terry is still here with me. Because Molly was only 8 when he began to have medical issues, I never counted on him being here to see her graduate from high school, or walk her down the aisle after she grew up. There was no reason to believe that given everything he’s gone through he would still be here 13 years later. But he is, and I know we’re fortunate because of that. That’s not to say, though, that I cheerfully accept everything that comes our way. I don’t. Initially, at least. But to witness how one of my friends lives his life each and every day, struggling on his own, and getting through each day to the next, I know we are fortunate.

Sometimes you have to be exposed to those other people with more difficult circumstances than yours to fully embrace the positive side of what is possible in light of the challenges you face. You cannot control what happens to you, but as the quote says, you can control your reaction to it. By recognizing how far we’ve come, and how lucky we’ve been so far, it makes the unknown of days tomorrow and the days after that easier to accept, and a lot less scary.

While I would never wish the circumstances of my high school friend or my husband on anyone, I’m glad we’re not so far down in our battle that we cannot appreciate the good when we see it or experience it. By recognizing and appreciating those parts of life that are good, the parts that aren’t so good are easier to bear. By witnessing someone else’s struggle, we’re made grateful for the life we know and live. It’s funny how life works like that sometimes.

d63325657db26399de0419dc28ad5efd

Reaching Anniversaries and Milestones

Posted on 02/13/2013 by Caren Rugg

We reached the 13th anniversary of the heart attack that caused Terry’s disability this week. Some have said they don’t understand recognizing an anniversary like that, but each day between that event and now is a day longer than we could have had, so it’s worth the effort to remember as far as I’m concerned. He defied the odds then, just as he has each time since.

This particular anniversary also created an anniversary subsidiary. I’ve now spent 1/4 of my life taking care of my husband and hoping that each day is not the day it all ends. There’s no question that the demands of all of his different medical conditions and the number of times he’s faced life threatening diagnoses have taken a physical and an emotional toll…but to realize that a full quarter of my life has been devoted to this was sobering. It also helped me understand why it’s been such an emotional challenge at times. Try living every day like it could be your loved one’s last, while you bite your tongue as some minor irritation that comes from living together, and try to force down the fear that this might be the day you lose that loved one…then do that for 13 years. It’s a lot. Some days I truly feel it. Other times, when he’s coasting along with no new diagnosis and a relative stability to his life, it doesn’t feel it’s been quite so heavy a load. It’s all about perspective. I just wish perspective wasn’t so influenced by what you’re experiencing at the time.

I have a chronic medical condition of my own with Rheumatoid Arthritis. Some people can identify specific joints that are affected by RA, but when I’m having a flare, it’s total body. I cannot lift my arms or move any part of my body without extreme and excruciating pain. What saves me when I’m feeling better is that it’s easier to remember how good I can feel in comparison to how bad I can get when I’m having a flare of the disease. It’s like childbirth, for you mothers out there. If you could vividly remember every detail of labor and what you went through, every woman would only have one child. But we focus instead on the end result of the beautiful baby we’ve waited for, and the pain fades away. OK; it doesn’t fade immediately, but it does, and we know it will again next time as well.

When we reach these anniversaries and milestones, we focus on the good stuff. He’s still here. Or his condition right now seems somewhat stable. Or he’s still here. Or he’s going to walk his youngest of three, and last daughter to marry, down the aisle this year. Or he’s still here. Those are all good things to recognize and celebrate, as far as I’m concerned. So with each of them I have a silent word of thanks that he’s defied so many odds…and continues to do so.

I’m hopeful a lucky 13 anniversary designation will bring him good fortune and better health this year. We both have good things to look forward and anticipate this year. We also need a span of time with relative stability, so our perspective remains positive. That will help us reach as many milestones to come as we can…and we’ll take as many as we can get.

3c3a09a8f4681615b15a732fa91a9e97

When Does Grief End?

Posted on 02/01/2013 by Caren Rugg

A good friend of mine from high school has been a family caregiver for many years. Her children are grown and gone from home, so she spent many long months driving a couple of hours to stay with her mother for days every week. Her mother died last year, and her older brother had some serious health complications that allowed her to help and care for him as he recovered. Like me, she’s done this taking care of folks for so long she may not remember life before being a caregiver. Now that she’s not providing care to others, her husband has begun to subtly suggest it might be time for her to go back to work. She knows she should, but can’t seem to get motivated to get in the job search yet. What I know that her husband doesn’t, is when your life has been defined and consumed by caring for others, it’s hard to know what to do with yourself when you no longer do that.

There’s a certain limbo that comes from being a family caregiver. Plans are fluid until they actually occur because there’s always a chance they won’t. Rest comes when you get it, not because it’s nighttime. Taking care of yourself comes after caring for your loved one. Thinking of what you want to do takes a backseat to thinking about what you have to do. Being a family caregiver is one of the hardest jobs you’ll ever love, but it comes with a whole lot of misunderstanding by those who have never walked this walk.

When her husband suggests she go back to work, he’s only looking at the facts. She hasn’t work outside the home because she’s been taking care of others. Now she’s not, so she has the opportunity to find a job. But it’s the emotional connection to what she’s done that he doesn’t fully understand. It’s the constant little buzzing in your head that somebody needs something. To think of yourself first takes time to adjust to, and doesn’t happen automatically.

Even more than adjusting to thinking of yourself first, comes the adjustment to the reason you are no longer a caregiver. She loved her mother, and felt honored to care for her and be with her at the end. But that love and that commitment to her mother didn’t end just because her mother died. Now she’s in the process of living through the “firsts” that occur when a loved one has died…first birthday without her, first holiday season, first everything you did with someone you loved, who is no longer here to share the experience. Those “firsts” are as hard as the “lasts” we experience with loved ones we know we are preparing to say goodbye to because of health issues. They remind us the one we loved is gone, and won’t be coming back. How long is long enough to get past all of that? It’s different for everyone, which adds to the pressure.

So while she can confess to me that she knows she should be trying harder to find a job, I know the reason it’s hard. I’m coming up on the 13th anniversary of the heart attack that led to the beginning of all of my husband’s health issues and disability. I’m scared for the day when he’s gone because I won’t know what to do with myself. I know that’s the place where she is now, and it’s going to take a little more time for her to move on from there. I admire the commitment she has to those she loves, and hope she can try not to be so hard on herself. She set a shining example to her children and the rest of her family, and I can only hope her husband recognizes that the same devotion she reflected in caring for her mother and brother may someday be the same devotion with which she cares for him. For both their sakes I hope they can have a life together where neither has to provide care other than what we do in marriage for the spouse we love. She’s done her tour of caregiving duty…it’s time now for her to do what she needs to do for her happiness. And I’m going to do all I can to help make that happen!

02ce98fd0ca3e3f28a82bf41df0c8988

More Time For Making More Memories

Posted on 01/15/2013 by Caren Rugg

I have been delinquent over the past few weeks. It hasn’t been for lack of interest, but rather, well, I’m not sure. We made the anniversary of the diagnosis of stage 4 bladder cancer, and with that recognition we moved past the “this could be the last (fill in the blank) ________” and we’ve moved into the “keep making new memories” phase. I like this one much better. It’s a good place to be, but still awkward emotionally.

Families everywhere receive their fair share of bad news on any given day. Ours isn’t the first, and certainly won’t be the last in that regard. Some news is permanent and unexpected, such as a fatal car crash, and some news is temporary, such as an unexpected diagnosis which can be treated. We fall into a nether-land between the two. Terry is still here, but is far from healthy. He’s been through too much. But he is stable. We know that his life expectancy is shortened, but he’s continued to stay around for us longer than anyone realistically expected given his circumstances. That’s the good news. The bad news is because of his compromised health he will never be healthy again. He will always be at higher risk for contagious diseases, and will have limitations regarding his ability to physically fight what comes his way medically.

When you are told that your loved one has been diagnosed with stage 4 anything, you start mentally listing all the special events it’s important for them to be there to experience. You question whether it will be the last birthday, anniversary, holiday, or whatever the occasion brings. His news came at the end of October, so naturally Thanksgiving and Christmas were all I could think about. He made it through those holidays, and again this year, so now it’s about trying to keep doing things and experiencing new adventures. It’s not enough to beat the odds and stay alive; you have to LIVE in order to stay alive. Staying home insulated from the outside world is not living, and not what either of us want to do.

We got a bit of a taste of new adventures when we went to Florida in late October. We had planned to go the year before when his niece got married, but his platelet count during chemo was so low he was not allowed to travel. I booked on an airline that allowed us to use the tickets within a year, knowing there was a potential we wouldn’t be able to go when I booked them. We went a year later, and as a result, were able to enjoy it. We traveled on a Tuesday, and he rested on Wednesday. We hit the beach on Thursday, and he took it easy on Friday. We did the beach again (much shorter time for him) on Saturday, and left on Sunday. The key for him was not overdoing it, and respecting limitations on energy. The key for me was sitting on the beach reading three books in three days as I listened to the pounding waves, and smelled the salt air, and felt the warm sun on my skin. It was charging my batteries to keep doing what I do, and reinforcing for both of us that we needed that temporary change.

But it’s what the trip represented that was so important to me. It represented that as long as he’s here we still have the opportunity to make memories. I know they are what will get me through when he’s gone, and it will give him an additional reason to fight and hang on when things get tough medically. We could stay at home, preparing for the next medical emergency, and waiting for his life to end. That’s not what he wants, or needs, and we haven’t fought as hard as we have for him to just watch the rest of his life pass him by.

So, while I’m no longer panicked that each upcoming event could be his last, I’ve cautiously begun to loosen up and think we might actually be able to plan to do some things. I doubt we’ll shoot for big adventures, but lots of little adventures add up. You only have one life…it’s up to you to make it all it can be, and to build up the memory bank for those left behind. It will always be worth the effort.

05563ab37886a793d4d32fa99b920f66

Getting One More New Experience

Posted on 10/29/2012 by Caren Rugg

Last December Terry’s niece, Kaci, got married down in Florida. We had tickets to fly down and desperately needed the escape. The wedding was occurring just weeks after his diagnosis of stage 4 bladder cancer, and we needed to have our spirits revived with sun, surf, family, and joy. It was not to be, as Terry had started chemotherapy and had such a low platelet count that his doctors said he could not travel.

Fortunately, I had booked on an airline that allowed us to keep the unused tickets as a credit to use within a year. Well, that year is almost gone, and Kaci has added a beautiful baby girl to her new family, and if all goes as planned this time tomorrow we’ll almost be there. I’ve been reluctant to get too excited knowing the odds of something going awry is always a possibility.

He got a chance to see his cardiologist last week and she thought he was doing well. His daughter, Sandy, was married the weekend before and he was tired, but overall holding his own. She thought a trip to Florida sounded like a wonderful idea. We couldn’t have agreed more. And then he started coughing…

Not only are we planning to visit family with a young baby who doesn’t need to be exposed to anything, but Terry’s own medical condition and health issues warrant limited exposure to others who may be sick. For him to have gotten sick last week was all it took for me to know I cannot count on this trip until we’re on the plane and on the way. And a respite from our life is so needed right now I cannot go to that place in my mind that says “What if we can’t go?”. I know it will be devastating beyond my acceptable level of disappointment. We have already canceled that trip once, and with what we’ve been through we need to know there will still be new experiences. I was afraid we had taken our last trip and had our last adventure.

So this trip is important on several fronts. To meet our new family members is important. But restoring our physical and mental reserves so we can get through what comes our way is equally important. I’ve recognized my tolerance for problems and things going wrong is at an all time low. I am never more than a few seconds away from tears for any given reason. I know it has been the relentless attacks on Terry’s health, and we just need a break from it.

I have no plans and no interest in doing anything but soaking up sun and water while I’m there. I’m not interested in sightseeing or shopping. I want to see water, hear water, and watch water. I do have a book to read but that will be the extent of my adventure. I want to regroup my mind and my body, our present and our future, and the understanding we still have experiences yet to come. We cannot know what they are or when they arrive, but a trip to Florida signals the new opportunities we may still have. The only thing that can stop us now is a certain hurricane causing damage and cancelled flights. To be honest, I’d have expected nothing less than a hurricane to interfere…it’s just how we roll!

f3832fb66e0a738200f9d3b2efc7a5d1

The Highlights of the Hard Life

Posted on 10/09/2012 by Caren Rugg

Caren and Terry at the start of chemotherapy for his bladder cancer in Nov. 2011. His face is flushed from his first treatment.

We’re coming up on the anniversary of Terry’s last major diagnosis. The call from the doctor informing me the bladder cancer was aggressive and stage 4 was that blindside, never saw it coming kind of call you never forget. It was a year that has taken an incredible toll on me emotionally. For him to be here after all he’s been through has taken an incredible toll on him physically. Together we make one slightly battle scarred pair; I get through the emotional strain because of his positive attitude, and he gets through the physical strain because I know what he needs and fight for him.

In February we meet another milestone. That will be the 13th anniversary of the medical event that started this whole odyssey. It began with a heart attack so massive he only had about 25% of his heart’s pumping capacity afterward. It was located in the left coronary artery, which is referred to as “the widow maker” because as the main artery feeding the heart’s blood supply, when there is a blockage that significant it usually results in the death of the patient. He came close on that one. He had a pacemaker/defibrillator installed at that end of that year to correct the potentially fatal irregular heartbeat his damaged heart produced.

Four years after that he had multiple trips to the ER and our primary care physician in a two week period before he finally collapsed on the floor at home and was admitted to the local hospital. After verifying a staph infection and being transferred to a larger hospital out of town they found patches of the infection in his heart chambers. By the time they took him in for open heart surgery he was hallucinating and delusional as the infection ravaged him. He spent six weeks in a rehab facility receiving IV antibiotics every four hours. He went on to have two other infections while in rehab and on the antibiotics. I brought him home the day before Mother’s Day, and spent that Mother’s Day sleeping, which I hadn’t done while he was hospitalized 45 miles away for a month and a half and I was driving back and forth.

That same year he developed a vomiting syndrome that never has been diagnosed nor treated. It led to multiple hospitalizations at our local hospital when we would be unable to stop his vomiting that could last more than 15 hours. The vomiting was a major life impacting event for both of us. He obviously had a tough time, but it was hard to predict when he would have an episode and we finally got to a point that he couldn’t travel and we couldn’t make plans for early in the day, when the vomiting would start.

After he was hospitalized six times in 2009 with the vomiting, we tried to get answers one more time at the beginning of 2010. We went to a research and teaching hospital about an hour away from us, and started with gastroenterology for a diagnosis. At one of his appointments Terry had not eaten and was having the discomfort and nausea that bothered him, so they did a scan. They found a mass on his adrenal gland. To determine the mass they did a PET scan. In it, his thyroid, stomach, kidneys, bladder, colon, and prostate lit up. They discounted the stomach because of high metabolic activity, and the kidneys and bladder because the tracer used for the scan was excreted through the urine. They recommended a colonoscopy, thyroid biopsy, and prostate biopsy. The prostate biopsy was negative for prostate cancer, but the thyroid biopsy was not. It was malignant. The colonoscopy Terry had done locally rather than at the hospital coordinating his diagnostic care. Making that decision literally saved his life.

When Terry met with the young surgeon about the colonoscopy, the doctor looked at some lab results we had provided him and looked at Terry and decided that he thought Terry had a rare pheochromocytoma. He said it was important that the surgeon removing the thyroid and the over-producing adrenal gland knew it was a pheo, or Terry would never make it off the operating table. Initially the surgeon did not want to verify a pheo, because high blood pressure was an indictor and he did not have high BP. I asked if it was possible for someone with his compromised heart function could have high BP, and he agreed that was not likely. They were prepared for problems as a result, and when it actually occurred they dealt with it, and he survived.

Losing an adrenal gland and his thyroid was an adjustment for him physically. He got through the rest of 2010 and about half of 2011 before having problems other than the vomiting, which still happened upon occasion. In May of 2011 he noticed blood in his urine. He had an appointment with our primary care physician who initially prescribed an antibiotic. He thought that helped and a couple of months passed when he noticed the blood again. The urologist prescribed another antibiotic but wanted to scope it. He found cancer, and made plans to treat it with a procedure that essentially laser burned the cells. He removed several samples for biopsy, and it was when those biopsies came back that I got the call about the diagnosis.

For three of his medical events I knew what was going on before him. I was usually the one to tell him or explain what had happened. It’s an odd responsibility to tell a loved one how close they came to death. It’s a helpless feeling to be witness to it, and having your life so completely shaken.

Terry has always been terrible with dates. He doesn’t know anything of certainty but his own birthday, and Jesus’ birthday, because it’s heavily advertised for two months. He will not know when these anniversaries come and go unless I tell him, but there’s no way for me to forget those days…ever. The end of this month brings the latest anniversary of bad news and hard life journeys. Our goal would be to recognize the anniversaries, rather than prepare for another diagnosis. And to put as much time between the day his heart stood still until today and tomorrow for as long as we can.

6cf34e04f4f2baab35a83fec05ee536e

Perspective on My Perspective

Posted on 10/03/2012 by Caren Rugg

We’ve dealt with Terry’s health issues more years out of our marriage than not. We’ve faced life threatening events, scary diagnoses, and disability. It’s been difficult and life altering, and I know the day is coming when I tell our stories myself because he’s gone. With as hard as it’s been sometimes, it’s been our journey, and our life together and it’s what we know. Even on a bad day, though, it doesn’t take much effort or much time to find someone who’s dealing with more than we are these days.

That point was made very clear this past week, when other families were dealing with tragedies that made ours pale in comparison. In one situation, two young twin girls riding on the same bike were hit by a car. One of them died a few days later at the hospital. I cannot imagine the devastation wrought on the families of these girls who had their whole lives ahead of them. There is no pain greater and no loss greater, than losing a child. I am aware each and every day that in that regard we are the fortunate ones. That is pain we’ve not experienced, and I truly hope it stays that way. There is no getting over losing a child. There is no forgetting what might have been, but will never be now.

The other heartbreaking situation was the airing of a “48 Hours” broadcast which dealt with the murders of a man and his girlfriend. He was the brother of a friend of ours. They were shot a total of 11 times as they lay in their bed sleeping. It took 10 years for the case to be prosecuted and for a conviction. The truly terrible aspect to this was the adult children, who were teenagers when their father was killed, testified against their mother, who they believed had committed the murders. She was convicted after just over 80 minutes of deliberation, so the jury agreed with the family. The couple both had children who are adults now, and they left siblings and parents who were grief stricken with the unexpected and horrific deaths of their loved ones. Their families never gave up hope of seeing justice, and while they will never have the two of them back again, they know the person responsible will never walk free again.

It’s easy to get caught up in the woes of your own world. It’s easy to feel overwhelmed and unappreciated for making an extra effort. But just as it’s easy for me to feel somewhat disgusted for those who create and thrive in the world of drama – because we deal with real drama that is not self created – it’s easy to forget that not that far away someone else is experiencing real pain and suffering from something worse than we’ve experienced.

I tend to appreciate the little things, and am grateful for what we’ve come through together. It doesn’t hurt every now and then to be reminded that there is greater pain out there than ours, and suffering which is deeper than we experience. It would be so much better for no one to suffer, but there can be no joy without sorrow. It is the balance of life that gives us meaning. For this past week, witnessing what others we know have experienced first hand, we know this time we are the lucky ones.

0c725cc9c9c646a0bf930e5643f74f66

The Undeniable Stress of the Unexpected Events

Posted on 09/25/2012 by Caren Rugg

I was humbled the other day by my six pound cat. Walking into the kitchen at a quick pace combined with him running through my feet led to me hitting the kitchen floor. Hard. It happened so fast I didn’t even have time to think about how to fall or brace myself. I lay there on the floor, thinking of how the fall was representative of my life right now. It’s filled with unexpected events that are beyond my control but that leave pain that lingers long after the event is over.

I’ve been on emotional quicksand since Terry’s diagnosis of stage 4 bladder cancer at the end of last year. My capacity to handle stress or bad news is at an all time low. Occurrences that should be irritating or annoying at worst can have me reduced to tears before I realize it. His health has been compromised since the disabling heart attack, but a stage 4 cancer gets your attention in a different way.

The heart attack was so unexpected we were forced to face the possibility of Terry’s mortality nine years into our marriage. The sudden health crisis grabs you and chokes you with a powerful realization of how fragile the pieces of your life are when you’ve taken them for granted. Cancer is a slow thief. You wrestle with the diagnosis and then watch the effects of chemotherapy, and surgery, and discomfort settle in on the one you love. It takes your joy, and your stability, and your future piece by piece and bit by bit until you’re no longer on steady ground, but on continually shifting and changing sand. It’s emotionally draining and physically tiring. As I lay on the kitchen floor, all of the frustrations of all that is happening with us was threatening to take over my mindset. It was tempting to just remain there wallowing in my pain, but I don’t have that luxury. I had to get up and I had to keep going.

I also understood looking up at my ceiling that I HAVE to stay healthy and mobile. I have to be able to do the things I need to do where Terry is concerned. Unfortunately for me, the physical demands have gotten harder as more time passes between now and when I had my last infusion for treatment of my Rheumatoid Arthritis. The insurance I applied for did not exclude RA, and would have accepted me, but required a $65,000 deductible for anything related to the arthritis. That meant it had no value to me, and I was advised to apply to the federal plan that doesn’t deny based on preexisting conditions. I’m at the end of my waiting period and able to apply now, but it’s meant six months of no treatments. For a disease made worse by stress, this couldn’t have happened at a worst time. My body did not need the additional abuse of slamming it onto the hard kitchen floor.

Terry has had a multitude of health problems, and each one has chipped a bit more away from him. We don’t know what’s yet to come, but I think this is about as good as it gets. Because of the uncertainty of his health I don’t feel I can try to go back to work yet. He has too many doctor appointments and days when he really is sick because of the vomiting for me to try to work outside of home right now. And while I do not regret the decision to be at home with him, I think emotionally I’m dealing with the inevitability that the ability to make decisions based on what’s best for me won’t happen until he’s gone. Try and wrap your head around that and see if wallowing on the kitchen floor doesn’t seem like an appropriate response to the physical pain accompanying the emotional strain.

I picked myself up then, and I’ll pick myself up again in the future, of that I am sure. As long as I can do that we’ll be okay. We’ll be better if we can catch a break and coast for a while. We’ll hardly know what to do with ourselves.

0de45e15c2ef572ece6ba04e121e85fa

The Medical Mystery Tour

Living with chronic illnesses, and the challenges they present in diagnosis, treatment, and quality of life. Come along for the ride with us!