We live in a three storied home, without an elevator, therefore we havemany stairs. When we moved here twenty years ago, many folks asked me, “With your disabilities, why did you choose a house with so many stairs?” The simple answer is we love the house. Its simple, ordinary Victorian charm appeals to both of us. Each time I come home, I feel it welcoming me with its crowded, cluttered, wall papered warmth. When we moved in I did so with a broken toe; Pyrex lid, direct hit. I had a small taste of the challenge and my other joint problems told the rest of that tail, ‘er tale, although that hurt, also. I guess my credo was and is: “welcome home” charm is hard to find and when you do, hang onto it with all your sentimental might.
My husband also had bad knees and has had both of them replaced while we’ve lived in this home we love. He managed quite well being the stubborn warrior he is. When asked about his po-operative recovery period he simply said, “If I have to go up and down those stairs on my butt, I will.” I don’t think he ever had to. As for me I just keep remembering all of our grandparents who lived in old, multiple storied homes and made it through life, so why not us? I trek them slowly and with always one hand free for the banister, going up and going down. I also try to remember to put a phone in my pocket when dealing with our stairs, especially on those bad days, which we all have. As far as my terribly arthritic knees, I often whisper the credo for all bad knee patients, which is “The good go to heaven, the bad go to hell.” Of course, that means you ascend with the better knee of the two and descend with the worse one. It is embarrassing when others hear me. I had one orthopod with no sense of humor think I was trying to convert him. Seriously, he asked me to repeat it, what I said and when I explained the expression his own face filled with relief. Wonder what soul secret he’s hiding?
There are many hundreds of metaphorical stairs we climb and descend when we live with chronic pain and illness. We must be more careful with many of these changes and challenges than with the literal stairway. I have often said to myself, “Oh no, I can’t go through this…not another challenge. No, I can’t do this.” When I’m at the bottom of another “stairway,” that is when I need the most help. I pray, I get outside and enjoy my flowers and the colors of the skies and the Columbia River and wait. I know the courage and the strength will come but first, there is this feeling of doubt, despair and rebelliousness.
Another stairway can be new medications to adjust to and then, of course, the dose or the medication is changed or some dire warning comes out i.e. you can burst into flames if you swallow this one. Daily scheduling for drugs is so important. I love and use those little weekly dosage containers. I hate them once a month but love them every other day. When I get around to swallowing my pills upon awakening in the morning I am not all that trustworthy and I know it. I learned not to put my prn or take as needed drugs in the bathroom in my tiny jewelry dish I used to keep in there. Swallowing a gold earring was a valuable lesson for me. Did you know a heavy metal can take four to five days to “retrieve?” Yes, of course I still wear them…I know how to clean jewelry and all manner of items. I’ve also discovered swallowing one of the dog’s vitamins does me no harm.
That leads me into my next stair which is cleaning. All roads lead uphill when it comes to cleaning yourself, your home and your yard when you are physically compromised. It all stinks. I love a clean and sparkling house but that’s one stair that is just not worth the climb. We live in civility of cleanliness. That means I give dirt, dog hair and tiny insects the right to be here until we are having company. After that, it’s everyone for himself. I attack what I can with my Swiffer duster, Roomba or Neato vacuums that propel themselves and my battery-operated moping device which is now on the fritz. My eyesight is poor thanks to one of my drugs I took for many years, and it can be a blessing when you can’t see those corners of the kitchen very clearly or cleanly. If it moves, smack it. If it stinks, squirt it. If it is sticky then spray it and step on a paper towel over the sticky part or you can call in the dog in lieu of spray it. When it comes to a clean car, well, that’s where my husband shines as well as the car. So many stairs to climb in this compromised life, the old adage still matters: one step at a time.
The changes that confront as disease encroaches, age approaches and there are no life coaches, can confuse us as to which stairs to take. When in doubt, wait and think. When tormented, seek help and when frightened, pray. We are never on any staircase by ourselves, not ever.
Anyone who lives with chronic pain and disease knows about flares. Whether you have a flicker or a complete burnout, flares are usually unexpected, of dubious origin and totally unwelcome. As to the causes of these days that bring about more fatigue, often more pain and grumpier attitudes, we each have our own answers. For me it is usually overdoing it the previous day or two, too much sun or my forgetting to take a prn medication I could have used. Stress is another known contributor and each of us handle stress in our lives so differently. Grief is one of the heavier forms of stress and has no answers as each of us handle grief differently. The normal passage of time, trusting our beliefs and warm memories have often helped me.
When accosted by flares that don’t go away, it may be your body’s notification it needs help. Time to get out the doctor’s phone number and have things checked out, labs drawn or just a reassuring visit. I think each of us have doctors we delay seeing for one reason or other, but the ones we like, in that case we reach for the phone with less trepidation. Drastic increases in pain, fevers, bleeding in stools, vomiting and excessive nausea are all good reasons to see the doctor. After many years of this way of life, most of us learn to see the signs when something is wrong. It’s difficult at times to be totally honest with ourselves but we need to develop this habit for our own protection and peace of mind.Denial is not your friend or mine when it is about our health.
This is one item I had to include because it has affected my life so drastically. The inability to sit was one of my first symptoms. I was a Director of Nursing in a small hospital in California and after several years of being on my feet more often, I was sitting more due to meetings and conferences. I would find my legs losing much of their sensation. Not that I ever had sensational legs; don’t want to confuse you. They just felt like they were not going to do their job which is to keep my feet flat on the floor and hold up the rest of my body.
I also had a longer drive to work of about a half hour. I loved the drive in my new blue Mustang convertible, top down, even in the winter with the heater cranking away. I know. You don’t have to tell me it was stupid. It was an indulgence for sheer pleasure. I found myself gravitating toward softer chairs, avoiding the old plastic styles you find in all institutions and businesses. I still made rounds with the doctors each day, sat through long patient conferences on the alcohol/drug rehab unit of the hospital and stretched in between. It finally got to the point when, after a 10-12-hour day and the half hour drive, one night I couldn’t get out of my car. My husband came out and I started laughing and said, “Honey, I’m having trouble getting out of the car.” He smiled and said, “It looks like it.” I finally managed, with his help, got in the house and reclined, feeling too ill to eat dinner. He and I would often meet for dinner on days we both worked because I was working the days and he, the nights. We had a favorite restaurant which was a converted Victorian style home. Those dinners became less pleasurable as the weeks passed. Sitting anywhere became a nightmare and affected my sleep and my bowel habits.
I finally had to take a leave of absence as I was seen by several local doctors and was diagnosed with many things from ankylosing spondylitis to stress. One orthopedic doctor put in bed for a month, thinking it was back strain. I tried to work from home but finally had to resign my nursing job. I was a mess and all because I had pain in my sitter. I was angry, frustrated and weepy. The only condition I had ever come upon in nursing that involved the buttocks was hemorrhoids. I knew that wasn’t my problem. I had taken a hard fall a couple of years previously and bruised my tailbone and torn a couple of intercostal muscles in my chest. How? I slipped on a wet floor at the hospital.
Three long and dreadfully frustrating years passed without a definitive diagnosis and we decided it was time to seek better medical care than I was getting locally. I was working part time during those years but only a couple of days a week. It was difficult but we needed the money and I needed to work for my own self-esteem. My husband was in nursing school while working full-time nights as a respiratory therapist. Our two children were in high school and life was otherwise normal. Each of them had part time jobs for the special things in life they wanted while doing great work in school. We had an enormous and loving Saint Bernard, a big yellow cat with attitude named Ozzie and all appeared to be good except for my inability to sit comfortably.
I made an appointment with a doctor my eldest sister had seen at UCLA and we drove the three hours down to his office in Beverly Hills. After my first exam, he literally pin-pointed my problem; in this case it was a ballpoint pen. I showed him where it hurt, he poked the area right over my sacroiliac joints and I assured him it hurt. No, I didn’t yelp. I am the stoic type. He marked the area with a pin as I was sprawled out on my stomach, and called in his physical therapist. They talked about me behind my backside…had to throw that in. Each time he touched that ink mark, I had the same reaction. He then injected me with the longest needle I have ever seen. Standing above my head he injected steroids into my SI joints. All the way home, all three hours I sat there in the passenger seat feeling like a new woman. That lack of pain lasted for about a week; but at least we had a diagnosis. Sacroiliitis with lupus-like-syndrome because of the rashes I was getting from any and all sunlight. We began treatment: steroids, methotrexate and NSAID’s. My life was improved but I was never well enough to return to nursing and that’s why you are reading this. I began writing and having articles published, as well as a monthly column in the local newspaper.
Sitting is why this segment is called musical chairs. Each time we go anywhere, I have to first find out what kind of seating there will be. When I get stuck in a hard chair, I get my soft foam cushion out of the car, well, actually my considerate guy does. I cannot travel on airplanes or other forms of public transportation. I have lumbar pillows in every chair in our home due to the SI joints as well as two crushed vertebrae. We do go out to eat occasionally but rest assured, I know what the seating is like, beforehand. I have missed out on my events involving my children and grandchildren because of my bad bum. I have learned every word in the English language for buttock. The irony does not escape me nor do the jokes. Of all things to go wrong…