Life Beyond Illness

"Resolutions" Vs. "Re-Do" Lists and Erasable Calendars

2012-02-01T00:02:00.001-08:00

"Resolutions" Vs. "Re-Do" Lists and Erasable Calendars

By this time into the New Year we have typically had time to reflect on the previous year and may be examining a “New Resolutions” list…or maybe even a “Re-Do" list! For those of us facing the challenges of chronic illness, over time we learn that each day is an opportunity to “Re-Do” something we may have missed the day before due to a flare-up of symptoms. The calendar holds a different perspective for us. We’ve learned the benefit of having a wipe-off calendar where erasable markers set the dates and the proposed activities and appointments, with the capacity to make frequent changes as the days and weeks transpire. That erasable or “re-doable” calendar signifies how we live our lives and how we, as a couple, as a family, or even as an individual, can truly live each day in the face of life changing illness.

Around this time of year, back when William and I were still dating, we started making special plans for our Valentines’ date to go to a really unique and romantic restaurant in an eclectic part of the city. That year, Valentine’s Day fell on a week-end which meant planning even earlier than usual to get a reservation on that extra busy holiday. By Thursday night however, my daughter Laney, who was a young teen at the time, had come down with a fever and sore throat. On Friday morning her symptoms were worse and it was clear she wouldn’t be able to go to school that day.

Having lost two infant sons prior to the birth of my daughter, you could say that she was truly a “miracle baby,” and I loved her as such. I had made a commitment that I would never be away from her whenever she was sick, and told my clients and friends that plans would be re-scheduled if my daughter needed me home with her. So, on this Friday morning, I knew I would need to cancel my Valentine’s Dinner with William. It was our first Valentine’s celebration together (as we had just become a “couple” the previous summer), so I felt really bad knowing I would have to tell him I couldn’t make it.

Little did I know that for him, the day was unfolding with problems of his own. He had encountered a number of hitches in his schedule that day with work on his second book, Understanding The Tin Man; a phone meeting with his new agent had been pushed back, and editing work had hit an unexpected snag. By the time I got the nerve to call him on his cell phone early that afternoon, he was standing 20 people deep in a line at the flower shop near his house while simultaneously trying to iron out matters on the phone with his editor. When I beeped in on call-waiting, he asked if he could call me right back and sounded a little harried. I thought to myself that my news wasn’t going to make his day any better.

When William called me back he briefly told me what kind of day he was having and I told him that Laney was home sick and hesitantly said I thought I should stay home with her that night, and probably the next (which meant we would have to cancel our hard-to-get dinner reservations). I could hear William let out a deep sigh on the other end of the phone as he said, “wow, I’m really sorry Laney’s not feeling well but to be honest, I was wondering how I was going to get everything done today and make our dinner on time.” He told me he’d been standing in line to get flowers for me for over 20 minutes and there were still about a half dozen guys in front of him waiting to do the same for their girlfriends or wives. We agreed to make “our own date” for Valentine’s and by Saturday night Laney’s fever was gone and she was feeling much better so we rescheduled our dinner for Sunday night.

William brought flowers for me and Laney on Sunday evening, and he was relieved that it only took fifteen minutes to get them since the furor over Valentine’s Day was over. We left Laney with a family friend and a new movie while we went to our Valentine’s dinner. When we arrived at the lovely restaurant that had been converted from an old church with a beautiful frescoed ceiling, we were surprised to find that except for one other couple who were dining outside on the patio, we were the only couple there. It was as if we had the entire restaurant just to ourselves!

That evening over a lovely candlelight dinner, we made a vow that from then on, we would never let a calendar dictate our plans or cause unnecessary stress. Little did we know that years later, as illness greatly altered my health and our lives, this would be one of our best survival tools! We learned to plan birthdays, anniversaries, and special holidays on the best date for us and our situation - with an alternate or “back-up date” in place. Friends, family and associates who know (and understand) the challenges we face living with chronic illness, also know that we do our best to honor plans or appointments but there will be times when we need to re-schedule, or, may even miss an event according to how my health is.

We've learned to accept that on occasion we will have to pay a cancellation fee if last minute health problems arise and I have to miss a professional appointment. We only make "flexible plans" to go to dinner, an outdoor concert, or a museum exhibit with friends and family members who are "on board" with our situation. This has removed unnecessary stress from our lives and helps us feel less anxious about making plans. Today, our erasable calendar encompasses four months and hangs on one wall of our office. It reminds us that life can and often does, change unexpectedly from day to day, and that IS a reality when dealing with the unpredictability of long term illness. And every day can be a "re-do day" if necessary -- no matter what time of the year, and erasable calendars can make life less stressful -- no matter what state your health is in!

Do you have a story about how you have learned to manage your time differently since you or a loved one became ill? If so, we'd love to hear from you!

[You can leave your story or tip in the comment box below or e-mail us at: jameyslacy@aol.com]

2011-12-01T00:06:00.000-08:00

Drought of The Body & Spirit

It started the last of May. A gentle celebratory hug incited yet another fracture in one of my ribs – long bouts of prednisone medication had made my once strong bones weak and brittle. We were planning a short trip to see my niece graduate and now, as the pain and inflammation made it hard to lie back or sit up, or even walk at a normal pace, I sadly realized that the trip was no longer a possibility. Trips for me require an unimaginable amount of planning, extensive packing (from medications and remedies, to special food, linens, air filter, and other items to reduce intense allergic reaction to most allergens both indoors and out). But I was determined as was my husband, William – who also had a special place in his heart for my niece since she stood up with us in our wedding as ring bearer when she was just four! During the first years of our marriage before my health spiraled downward, this precious one would visit us often and as my God daughter was much like the seconddaughter I didn’t get to have. As my health has been weighed down by more conditions and travel has become so difficult, I’ve missed out on visiting her and my other nieces and nephews.

My sorrow over missing her graduation and the pain from the re-fractured rib sent me into depression and then, to make matters worse, a terrible heat wave rolled across the state and enveloped our far most Southern city with the hottest temperatures in 30 years. The high levels of humidity and the resulting ozones from the heat and pollution seeped through the loosened seals of our hundred year old house, leaving me burdened with chronic allergies and heightened fatigue and pain. And thus began the worst drought – environmentally and for me; physically and spiritually.

It takes a great deal – me digging way down inside with Divine Assistance to share with others (especially those who I interface with who are also battling critical/chronic illnesses) and of course anyone reading this blog or our book, when I have come to an impasse with health challenges and my life in general. For most of my adult life and even some of my teen years, I spent a good deal of time with my writing and in my work as a Fitness Specialist helping many clients in overcoming weight and eating issues, rehabilitating from injuries, illnesses, and poor metabolisms and weakened bodies. Whether writing fiction (short stories & illustrations) for a youth magazine as a young teen, or writing non-fiction on wellness topics over the years of my career, I’ve always been the “coach” the “encourager” the one who helped and hopefully inspired others.

Now, after battling a half dozen debilitating chronic diseases (two, for over 20 years – the others for over 10 years) I find myself at times in a place where I feel physically and spiritually crippled, stymied, without encouraging thoughts let alone, uplifting words.

To some, who know of my faith as a Christian-the kind who loves and tries to follow Jesus’ teachings, or as author, Dave Burchett, suggests in his book, When Bad Christians Happen To Good People… to get my walkin to match my talkin, it may be hard to read this. “Jamey, you’re always so encouraging – so supportive,” many have said, but truth be known, I too fall into the darkness. And here is where I am learning humility. Oh, I’m very familiar with being humble for chronic illness, chronic (and regular debilitating) pain, and body altering medications - that have added more damage to my body from ravaging side effects, has made humility a regular companion. But like the five months of relentless drought conditions in our region, I am trudging through the desert physically and spiritually, with no oasis in sight, I worry that to speak this, to write it, might somehow discourage others or get them down. Okay. I know I’m not God;, I’m not puffed up with myself – just uncomfortable with the thought that by revealing my moments of despair and even hopelessness, for concern that I might create sadness in someone else who needs encouraging words and hope.

While reading, What I Learned While Lying Down, by Angie Dugi, I was completely surprised to find similar feelings expressed by this dear woman who is surely one of the sweetest and most faithful women I’ve ever encountered! Her book is also about her odyssey with chronic illness and how it has changed her life and the lives of those who love her – especially her husband, Greg, and their children. In between so many inspiring pages there are also passages such as this; “I am grieving and mourning over so many losses…I’m alive and breathing but I have lost sight of what it really feels like to be alive. I catch glimpses of it in other people and I envy it…I long to escape the pain, even to run away, but the disease would only follow. Sometimes I hate this sick body because it traps me with all its malfunctions and restrictions. I it is so hard to positive and I feel like I’m losing my grip and slipping down a steep slope…I have felt such despair, it has been dreadful and dark.” I realized as I read these words tucked in with other passages of how Angie persevered and overcame such trials, that all of these feelings; from the hope to the despair, are the threads that compose the tapestry of our lives and our journey with chronic illnesses.

With that said, I’m going to be reveal my own vulnerability and confess that like Moses, I’ve been stumbling around in the desert for several months now. I’ve endured bouts of angina, a lupus flare up that is affecting my organs and not letting up, and a complete break-down of my immune system with chronic allergies weighing down my body’s already limited ability to contend with chronic disease. Then there are the baffling and ongoing skin problems and the chronic pain from inflammatory disease of the muscles (which greatly affects both the nerves and incites more pain). I spend 5 to 8 hours per day applying and maintaining special ointments to my skin to protect it because my immunities aren’t doing the job and, it takes me 3 to 4 hours of careful preparation before I can even leave our house. Now, if you’re still reading, you’ve got courage and compassion; two vital things for those battling chronic health conditions and, also for those who are not ill, but who loves someone who is.

In the book I co-wrote with William, A Husband, A Wife, & An Illness, there are many places where I write about the burden of illness but also, about many different ways to cope, and even overcome some aspects of chronic disease. It’s actually some very good stuff – written from my heart. And I am humbled and overjoyed that many people have told us it has helped them in their own ordeals with illness. However, this “record dry spell” of fighting several illnesses at full flare for over five months has left me bone weary and just wanting to lie down and sleep and never awake to the pain and suffering again.

Have I given up on my faith? No, because I still pray to a Loving God daily – granted sometimes in silence and sometimes in moans. Yes, I pray for help and strength and healing and sometimes just for God to let me go to my eternal home. I also continue daily to pray for loved ones (some of whom have no idea that I do so) and for virtually anyone who comes into my mind or heart with needs. And then, like Job, some of my prayers are more a display of anger, frustration, and questions; “God, are you listening? Do you still care?” Have I lost all hope then? No, not ALL hope, and if a mustard seed of belief can carry us then I would think a mustard seed of hope would too…time will tell.

In the meantime, I will do what I can, not one day at a time, but one hour and sometimes even one minute at a time, to try to survive this drought and hopefully, prayerfully, come upon an oasis where my body and spirit may rally.

Cry Some...Cry More if you need to, Laugh (whenever you get the slightest opportunity), and Pray Often (especially when you don’t feel like it!) ~ Jamey Lacy July

2011-09-22T17:21:00.000-07:00

Healing Activities for Couples

The following is an expanded version of the list on our Couples Facing Illness web site (that some followers have had difficulty locating).

1. Create together: cook a meal or new dish; let the patient spouse do the "sou" chef or minor prep work and well spouse can actually do the cooking/baking. Re-arrange your furniture -- let the well-spouse relocate the heavier stuff =), paint a giant poster board any way you're inspired, grow a plant or a small herb garden, make up a secret and "kinda krazee" handshake, complete a cross word puzzle or a picture puzzle, co-write a "where we are now" letter to send to extended family and friends. Use your imaginations together.

2. Practice deep breathing together for stress and PAIN relief (and/or meditate together). If the patient spouse is going through a flare-up, light a few natural soy or non-toxic candles/dim lights, put on soothing music and just sit or lie next to one another. Try deep breathing in unison.

3. Don’t let your bedroom become a “sick room.” When you wake up, get up and go to another room in your house where you can rest and recoup. Change into fresh (comfortable) clothes even if it's a new pair of pajamas or warm-ups.

4. Keep bedroom healthy with positive messages, happy photos, plants, let sunshine & fresh air in, play uplifting music while awake and calming sounds for sleep time. If you live in area where the air is unhealthy put an air filter with ionizer in your room.

5. Play! Try simple board games or cards indoors, draw or paint, make a collage of photos & images that inspire you to feel happy & heal. Put up a soft, indoor mini basketball hoop & practice tossing ball from various positions, use your imagination. Share a computer game that you both like. On the patient spouse's "stronger" or "better" days, visit your local park on mild weather days for a light picnic or fly a kite!

6. Laugh together; watch funny shows/movies. Tell jokes. Do silly little dances, whistle, sing fun songs, recall experiences that make you laugh, and look at photos of fun or funny times.

7. Go for walks together (just get outside). Walk around your house or yard. If patient spouse must use a wheelchair, the well spouse can find an area in neighborhood with sidewalks or even pavement and burn extra calories wheeling your mate. Sit and watch the sunset or go out in early eve and look at stars.

8. Recycle or give away something you no longer use. Replace something old or in disrepair with something new (old shoes, lamp shade, small appliance, books or magazines you no longer need, etc.).

9. Exercise together and encourage one another to eat healthy and be active. If patient spouse is unable to do light exercises, help her/him to do gentle stretches on bed while you stretch beside the bed. If patient spouse is unable to go to gym encourage your well/care-giving spouse to work out and ask them to "do an extra set or walk an extra block" for you!

10. Break your routine occasionally; go for a drive on a scenic road, visit a new exhibit at a museum during off hours, try a new recipe or restaurant (order "to go" if you don't feel like eating out). Listen to a new kind of music. Learn some words & a few phrases in another language and practice saying these to each other.

11. Do something kind and show appreciation for one another each week. Buy or make a small gift (poem, card or note of thanks, small non-toxic scented candle or soap), do a small chore or errand that your mate normally does, leave a loving message or text on your mate's cell phone, etc.

12. Practice loving touches every day such as; hugs, kisses, gentle pats, light massages, holding hands, etc.,

13. Take turns reading small sections of an inspiring book, scripture passages, and inspiring and uplifting quotes. Start with just a 3 to 5 minute reading. Also, listen to inspiring stories, scriptures, or poems, together on audio CD.

14. For special events (birthdays, anniversaries, etc.) splurge and have someone come to your home to prepare and serve dinner, get his & her massages, invite a friend, church member(s), or neighbor(s) over to play a musical instrument.

15. If you have children at home, ask them to do a small play or performance for a weekend night. (Have organic pop-corn or chips and salsa & beverages afterwards).

No matter how difficult things can be at times, try to remember to lighten the moment with a silly song, joke, gesture, etc. Do small things to change up the routine and take occasional breaks from one another by going to lunch, a lecture, movie, or coffee, with a friend or family member. The patient spouse can have a friend over to the house if he/she can't get out.

We welcome you to share a unique healing activity that you and your spouse do together (just click on comment below).

~Cry Some, Laugh More, Pray (and Play) Often~

2011-08-31T06:22:00.000-07:00

Survival Tips for Chronically Ill;

Coping With Extreme Heat from Weather Disasters & Power Outages

Those with chronic illness and their loved ones can best survive power outages and catastrophic weather in hotter regions of the U.S. by planning ahead. The following are things that you and/or your caregiver(s) can do to be prepared:

Ø If you or a loved one has a serious health condition that necessitates constant use of electricity, your doctor can write a letter on your behalf and you can submit it to your local power supplier. This can help in unplanned power outages where the electric company will work to get your power on sooner. Do this ahead of time!

Ø Contact your electric company and request (with a copy of the letter from your doctor) that you be notified before the electricity is turned off for a “blackout.”

Ø Keep a cell phone fully charged so you can call for help/assistance.

Ø Establish several alternative shelters or “healthy places” with electricity that you can retreat to such as a friend or relative’s home, hotel, or church/retreat camp, that is outside of the affected area or, a place that has a generator. Do this ahead of time before weather power outages or mandatory blackouts.

Ø Have a caregiver, friend, or relative at the ready to drive you to one of these places. Make sure the vehicle you will be riding in has air conditioning.

Ø Have extra bottled water and hydrating drinks at the ready (pack some in a box or carry bag for travel). Drink hydrating fluids every 15 to 20 minutes OR take generous sips every 3 minutes.

Ø Wear lightweight cotton clothing (natural fibers that breathe). Loose drawstring cotton pants or skirt, light cotton blouse or t-shirt, comfortable slip on shoes or sandals.

Ø Wear a medical bracelet that provides pertinent information about your identity, health conditions, medications, allergies, and emergency "contact person." If you don’t have a bracelet, print this information on an index card and have it laminated (waterproofed) and secure it to your clothing. Also keep a copy of this information in your purse or wallet.

Ø If you have a condition that is exacerbated by direct sunlight or heat and/or, take medicine that requires you to stay out of the sun; have an umbrella and a light weight floppy cotton hat/cap to protect yourself while you are outside. ALSO keep a natural sunscreen (that doesn’t contain irritating chemicals or ingredients) on hand and apply every 30 to 90 minutes.

Ø If there is a chance that you will need to be away from home overnight or for more than a day, pack a bag with your medicine, special supplements, and remedies, and have special medical equipment ready for transport. [Keep in mind that weather disasters such as hurricanes, tornadoes, floods, etc., may result in areas being without energy or water supplies for days, and sometimes even weeks. Make sure you make adequate arrangements where you will be staying, and, check with neighbors or the power company to make sure your energy and water sources are restored before returning home.]

Ø If you are on a special diet, pack & label some of these foods, drinks, etc. and keep them ready in your pantry or fridge. Have a portable ice chest nearby to carry them in.

Ø If the power outage is a mandatory rolling blackout, call your electric company to give you an estimated time that your power will be out – if it is only for a few hours or so, ask them to give you a list of areas that will have power. You may be able to take refuge in a church, library, grocery store, restaurant, or shopping mall right in your city and avoid travelling long distances.

Ø Check daily weather reports in your area. You can wait for your local news (or if you have cable), “The Weather Channel” to forecast for your region. But if you have Internet access, you can go to http://www.wunderground.com where you can type in your zip code and get updated (hourly) weather reports and 5 day forecasts for your area (anytime). Also, check out http://www.airnow.gov/ to determine the air quality (ozones and allergen levels) in your area.

Cry Some, Laugh More, Pray Often ~ Jamey Lacy July

2011-08-31T04:27:00.000-07:00

Extreme Weather Poses Special Challenges to Chronically Ill

Very few people escape the trauma...that a natural weather disaster yields, but for families or individuals facing the added burden of chronic illness, that trauma is even more intense.

We are grateful that hurricane Irene ended up doing far less damage to the East Coast than was anticipated. However, we could not avoid little pangs of anxiety over just the memory of what we (and hundreds of thousands of people living near the Gulf Coast) went through as Hurricanes Katrina, Rita, and Ike, pummeled our world just a few years ago. Very few people escape the trauma (to our minds, bodies, and property) that a natural weather disaster yields, but for families or individuals facing the added burden of chronic illness, that trauma is even more intense.

For those relying on special ionizing air filters, sleep apnea machines, oxygen therapy, special medical monitors, etc., the loss of electricity for even a few hours can be life threatening.

Living without electricity and air conditioning in an unbearably hot region, can make a drastic impact on chronic health conditions; from increased blood pressure to circulatory problems that can cause a sudden increase in overall edema (swelling), severe burning and redness in hands, fingers, and feet, (from autoimmune conditions like Raynaud’s and fibromyalgia), to respiratory complications for those with allergies, chemical sensitivities, asthma, and internal inflammatory symptoms. For those relying on special ionizing air filters, sleep apnea machines, oxygen therapy, special medical monitors, etc., the loss of electricity for even a few hours can be life threatening.

During that seemingly endless journey, I had severe chest pains - symptoms of unstable angina, and everyone’s health was challenged in the extreme heat and cramped conditions.

The mandatory evacuation from Houston for hurricane Rita was a grueling 23 hour drive with my husband and his parents – who were also coping with several serious health conditions. Our destination was my younger sister’s home in the Dallas area which would have normally been a 5 hour drive. During that seemingly endless journey, I experienced a severe bout of chest pain from unstable angina and everyone’s health was challenged in the extreme heat and cramped conditions. So when hurricane Ike came along just a few years later, we decided to try and stand our ground. Big mistake! Although Ike was only a category 3 hurricane it had an unexpected diameter or body that was much wider than was typical. So, after 8 or 9 relentless hours of high winds and rains pummeling homes, trees, power lines, and property, the resulting damage was more like that of a category 4 hurricane.

As the hours slowly moved forward and the heat and humidity steadily rose; we ventured out to see what chaos the storm had wrought on our neighborhood.

Like so many other people, we optimistically thought (especially living just a few miles from the medical center) that our electricity would be back on within a few hours or, at least, by the following day. As the hours slowly moved forward and the heat and humidity steadily rose; we ventured out to see what chaos the storm had wrought on our neighborhood. What we saw reflected the same scene throughout most of Galveston, Clear Lake, Houston, and cities as far as Huntsville. Our daughter, now living in her own place in The Woodlands (some 20+ miles north of Houston) found a large tree ensconced in one of her bedrooms.

In our area next to a large city park, golf course, and museums, debris from homes...sections of roofs, porches, doors, and siding, were strewn across yards and vehicles.

In our area next to a large city park, golf course, and museums, debris from homes – some more than 100 years old, including; sections of roofs, porches, doors, and siding, were strewn across yards and vehicles. Large trees that had stood for over a century were lying across streets with their branches broken across fallen electrical lines. By mid-afternoon, my fingers, feet and ankles were bright red and swelling steadily and my breathing was labored. We knew I would have to relocate to a place with electricity or expect to end up in one of the many over-crowded emergency rooms in Houston’s Medical Center.

It had been a terribly difficult year; we all felt tremendous loss when Mom July passed away ... Just a week after her funeral service, hurricane Ike hit...

It had been a terribly difficult year; we all felt tremendous loss when Mom July passed away a month after she experienced several strokes. Just a week after her funeral service, hurricane Ike hit and in the midst of his grief, Dad July was unwilling to relocate temporarily to a healthier environment in the FW/Dallas area. William drove me to my sister’s home and turned right around and drove back to Houston to watch over Dad.

William and his father, (who was determined to stand by the 100 year old family home) suffered through intense heat, humidity, and a nightly onslaught of hungry mosquitoes...

My dear niece graciously loaned me her bedroom where there was a thermostat so I could stay cool and manage symptoms. Meanwhile, William and his father, (who was determined to stand by the 100 year old family home) suffered through intense heat, humidity, and a nightly onslaught of hungry mosquitoes in the midst of their grief. Like most Houstonians, they watched in frustration as food in the freezers and refrigerators went bad. They spent 12 long days and nights without lights, air conditioning, hot water, or the use of any appliances, before the electricity was restored. It took a toll on relatively healthy individuals such as my husband but was devastating to others already weakened by illness. Although Dad July was adamant about riding out the effects of the storm, and seemed to be holding up health wise, his health suddenly worsened the following month. We lost him two months after Hurricane Ike.

Extreme heat, humidity, exposure to sun...typically takes an immediate toll on those of us battling chronic health conditions. But...like my husband’s father, the damage it exacts...may not be apparent until weeks later.

Extreme heat, humidity, exposure to sun, and the absence of electronic medical machines, monitors, etc. that help manage our symptoms, typically takes an immediate toll on those of us battling chronic health conditions. But for others like my husband’s father, the damage it exacts on one’s health may not be apparent until weeks later.

...like many other drought stricken areas of the country, we face the possibility of rolling blackouts...a dire matter for anyone with chronic and/or critical health challenges.

Now, as we face one of the hottest summers in 30 years, with temperatures of 107 degrees and heat indexes near 120, like many other drought stricken areas of the country, we face the possibility of rolling blackouts. This is an inconvenience for most but a dire matter for anyone with chronic and/or critical health challenges.

If you are facing a...weather disaster or...a mandatory power blackout – be prepared for the worst, and expect and pray for, the best.

If you are facing a hurricane or other weather disaster, or the possibility of a mandatory power blackout – be prepared for the worst and expect and pray for, the best.

{See following post, “Survival Tips for Chronically Ill; Coping With Extreme Heat from Weather Disasters & Power Outages”]

Cry Some, Laugh More, Pray Often ~ Jamey Lacy July

2011-07-31T23:58:00.000-07:00

Kids View of Adults and Chronic Illness

When we are in the throes of battling chronic illness, as adults, we have specific information and our unique perspective (whether we are the one with the health challenges, or, the adult care taker such as a spouse, parent, close friend, or family member) of what we are facing each day. Since most chronic illnesses last way beyond many months and often, even years, we learn how to look at our lives with a different viewpoint then most people who are generally healthy.

When we experience a flare-up…and have to excuse ourselves, all children notice is that we have left…They do not understand the “whys.”

The children in our lives; from neighbors and our friend’s children, to nieces and nephews, and our own kids, tend to have a different view of our ongoing battle against chronic disease. Of course, the age of a child has a lot to do with how they see our situation. During the earlier stages of confronting several autoimmune conditions, I left my personal training business to write part-time from our home and speak at a limited number of venues each year. Our house had enough extra bedrooms to accommodate frequent visitors for overnight stays. It was hard to tell we were a “one child” family because our daughter often had friends over and nieces and nephews would stay over during summer months and holidays. For me, as with many people, chronic illness doesn’t just make one big grand entrance into our lives, but begins with short visits that eventually become more regular and the stays become longer until it has finally moved in full-time! And those earlier phases of illness don’t usually show visibly – hence, the term, “invisible illness.” So, when we experience a flare-up or a cycle of symptoms and have to excuse ourselves early from a gathering, all children notice is that we have left. They often do not understand the “whys.”

My niece, like most young children had compartmentalized complex chronic illness into terms she understood; “are you’re ouwees better?” And, if so, “Can you come and play?”

On one such occasion, we had different family members visiting over a Thanksgiving holiday. After helping to get the dinner underway in the kitchen that afternoon, I was having a lot of inflammatory pain in my low back, shoulders, and upper legs. I excused myself to go upstairs and take an anti-inflammatory medication and rest for a short while. After about 20 minutes or so, my bedroom door opened ever so slightly and a small person walked quietly toward my bedside. One of my nieces, who was probably about 4 at the time, placed both little hands and her chin over the side of my bed and said very quietly, “Are you awake Na Na?” (the nickname that had been given me years before, by my eldest niece when she was about 11 months old and had trouble pronouncing the “J” and other letters in my name, had been adopted by every child after her). Smiling, I said, “Yes.” This little one next wanted to know, “are you still sick Na Na?” Only understanding her reference point for illness which were things like tummy aches, sore throats and fevers, ear infections, and other typical childhood conditions; temporary episodes that were over almost as quickly as they developed. “If you’re ouwees are better can you come back downstairs and be with us?” My niece, like most young children had compartmentalized complex chronic illness into terms she understood; “are you’re ouwees better?” And, if so, “Can you come and play?”

In the complexity of all of this, sometimes a kid’s simple viewpoint of what we are going through can actually be welcome.

It is common for people with chronic illness to have more than one condition. In fact, most people with autoimmune diseases eventually develop secondary illnesses. For instance, many people with connective tissue diseases will often end up with another diagnosis such as lupus, Sjogrens, Reynaud’s, and/or chronic fatigue, And, where there is chronic inflammation, there is chronic pain, and where there is chronic pain, there is often depression. The depression is not only from circumstances or psychological (which can often be effectively dealt with through counseling, meditation/prayer, and/or, support groups), but it can also be chemical or physiological, as a result of serotonin levels or other natural mood elevating hormones being suppressed by pain (which can be helped by an anti-depressant or anti-anxiety medications). In the complexity of all of this, sometimes a kid’s simple viewpoint of what we are going through can actually be welcome.

I vaguely remember being taken on the stretcher from the house to the ambulance, but apparently there had been quite a few neighbors looking on.

A few years after that Thanksgiving interaction with my niece, we had moved to another town to help one of my sisters through a bout with cancer. Unfortunately, my health had worsened as I had developed several more conditions that had truly begun to wreak havoc on our lives. I had signed up to take my sister to special appointments (sometimes an hour or two from where we lived) and to every chemotherapy session, and then to the pharmacy and usually the video store to get movies to watch as she rested through the week-end. During one of these weeks, I had a lupus flare-up and became so ill during my sister’s chemo session that she ended up driving us back home. By early the next morning, I was losing consciousness and I vaguely remember being taken on the stretcher from the house to the ambulance, but apparently there had been quite a few neighbors looking on.

…he began with, “Is your wife sick?” (To which my husband said, “Yes.”) Then he asked, “Will she die?” (“No.”) “Were you sad?” (“Yes.”) “Did You Cry?” (“No.”)… then with a nod of his head, the interview was over…

While I was in the hospital, my husband had an unexpected visit. When he opened the door, our neighbor’s son, Theo (who was about 9 years old), had apparently been appointed by a half dozen other kids on the block to retrieve pertinent information regarding my ambulance trip to the hospital. When William opened the door, Theo wasted no time with formalities. With the seriousness of a wartime journalist, he began with, “Is your wife sick?” (To which my husband said, “Yes.”) Then he asked, “Will she die?” (“No.”) “Were you sad?” (“Yes.”) “Did You Cry?” (“No.”) And then with a nod of his head, the interview was over and Theo was heading toward the semi-circle of kids standing with their bikes at our front curb, to deliver the vital news.

…it’s important to be frank with them… to have a deeper sense of gratitude for their own health and ability, and, the important feeling of compassion…

Of course as kids get older, they are capable of a deeper level of understanding about the adults in their lives who are battling chronic illness. And, it’s important to be frank with them (as well as with other adults looking on) about what we truly going through. This helps them to have a deeper sense of gratitude for their own health and ability, and, the important feeling of compassion and hopefully, the inspiration to help those who are hurting.

But we, who are going through the throes of chronic pain and illness, can also be buoyed by those simple child-like viewpoints at times. When I’m in the middle of a flare-up, the intensity of the moment can be lightened considerably as I think of those “kid perspectives” and I remember when my “ouwees are gone,” I can go and play.

~ Cry Some, Laugh More, Pray (& Play) Often ~ Jamey Lacy July

2011-06-30T20:59:00.000-07:00

Pray, Eat, Take Meds, Love

Well obviously, my title inspiration comes from the book, Eat, Pray, Love (Viking 2006) by Elizabeth Gilbert. I’ve only read segments of the book but enough to opine that the movie, in which Julia Roberts plays Elizabeth’s character, is not quite as good as the original story, but, stays fairly true to the authors’ journey. A journalist, who’s found herself unhappy in her marriage, travels to Rome, India, and Indonesia, to do what many of us may only dream of; search for answers, spiritual healing, and peace in our lives -- while traveling to exotic places.

For me and the millions of women (and men) who are battling chronic health conditions, this is more fairytale than reality, since most of us don’t have the physical health, strength, or financial resources, to travel across the world to sort things out and make sense of our lives. The cost of ongoing diagnostic testing, ER visits, medications and treatments typically eat up any allowance for extensive travel expenditures. Physical limitations from chronic illness often make travel an ordeal for most of us and simply impossible for some.

So, how do those of us in the trenches fighting to gain ground with our health - while facing the divorce of our physical capabilities from our bodies, find our path to spiritual understanding and peace? We may not be able to travel to exotic locales, but we can look for a place in our home, in our church, an open neighborhood chapel, a museum, nearby park, or even the library during “off” hours. Any place where we can sit and be quiet with God will work. Here, we can breath in deeply (through our diaphragms) that Divine light and love, and then slowly, exhale, to release anxiety and tension. This creates a perfect opening for prayer which can then lead to that precious quieting of our minds to better receive understanding, or at least, a bit of peace in our unique, and at times, chaotic journeys.

I’ve learned through ten years in the fire of physical pain from several complex health conditions, that for me, the first step is always prayer. It doesn’t matter how you pray – whether casual petitions and thanks, or formal prayers we’ve learned from our religious beliefs. God knows all languages – even our sighs, cries, and unspoken thoughts. Prayer can be something as simple as Author, Anne LaMotte’s “Help me, help me, help me!” and, “Thank you, thank you, thank you!” or as detailed as the 23^rd Psalm (“Lord, you are my Sheppard, I shall not be in want…”). My prayer “staples” in the most troubling moments range from, “God is with me, Christ’s essence is upon me,” to, “Thank you God that things are as good as they are!” And in the worst of my "worst" moments, I mutter prayers like, "G-O-D...are you there?" Or, like a small child to her parent, "I need YOU!"

For those more challenging episodes in the midst of chronic illness, it’s necessary to develop our own individual “triage” (survival) plan. For me, and my care-giving husband, when a flare-up suddenly strikes, our first course of action is also to pray -- only right where we are at that very moment (no time for meandering to the park’s reflecting pond). We get quiet and ask for God’s loving essence, power, and clarity upon the situation. It is truly amazing how much better we both do when I’m in a critical place when we remember to pray first.

Then … I eat. Usually not pasta or pizza as Gilbert did in the first phases of her journey in Italy, but something “clean” and easy on the digestive system like organic low-fat yogurt with organic fruit and rice cereal, or some black beans with a few tortilla chips (whenever possible we choose organic because it delivers more nutrients and less toxins to the body and FYI – there are some great organic pizzas and pasta right here in the U.S. ;-)!

This prepares my digestive tract for the next step; take meds. I take whatever medications are necessary – conventional and/or natural remedies to address my symptoms.

Finally, I settle in to a relaxed position – lying on the bed propped up with pillows or reclining in a comfortable chair…and it is here, in this place and at this point, that I seek to experience “love.” Obviously in these circumstances, I’m not referring to romantic physical love but soul love. If my husband, daughter, or a close friend is with me, their loving presence is a balm to my pain. I also think of other beloved people in my life who have shown me love and I give thanks and silently pray for blessings upon these earthly angels. I think of moments that have brought me the most joy in my journey here and let those thoughts of love flow through my body, and in most cases my condition begins to stabilize, Again, I give thanks. Then, after I’ve prayed, eaten, taken my meds, and loved, and I’m feeling better, I might read a book about someone whose life if very different than mine…yet somehow quite similar.

Cry Some. Laugh More. Pray Often – Jamey Lacy July

The Only Salvation from the Death of Our Life Dreams is the Birth of New Dreams

2011-05-09T18:46:00.000-07:00

“The pain of lost dreams is too much for any human soul to bear.” Small Island (PBS 2009)

The recent celebration of Easter – which embodies the truest concept of life, death, and resurrection, has caused me to further examine something I’ve been grappling with for a while now; the death of our “Life Dreams.” When a baffling chronic illness and secondary conditions literally derailed my body and health, and, our lives about 10 years ago (I say “our” because when one spouse/parent becomes seriously ill in a family, everyone is affected), we quickly learned how fragile and unpredictable life truly is. As the months and years transpired, and we searched for a diagnosis and a cure, I had dozens of near death moments – some in hospital ER’s and some at home. We became very familiar with the sobering choices of calling an ambulance and going through the often frightening and frustrating experience of an emergency room (because when your health is failing from an undiagnosed chronic illness, treatment is typically more “miss” then “hit.”) Our other choice was to call our closest loved ones -- those who could handle the erratic highs and lows of someone battling the unknown in a quest to stay alive and hopefully recover, and, our Reverend and church family to pray for, and with, us.

Struggling to outwit death wasn’t the only battle we became familiar with. As time went on and tens of thousands of dollars were spent in our quest for my healing, we began to experience the death of our dreams…the plans we had made for our marriage and family, for my work and career, even our retirement, were slipping away. After I left my personal training and physical re-conditioning studio and my COBRA ran out, we were unable to get health insurance due to the fact that I was ill (pre-existing conditions). My husband, William, was self-employed as a writer and speaker, so we didn’t have access to a group policy. Subsequently, every medication, every visit to a specialist, every medical test, went straight out of our pockets. We were not able to sell our beautiful home quick enough in a slowed economy and helplessly watched as the bank foreclosed. As I battled the illnesses, we also saw the decline of my body in my physical strength and appearance. William took on various extra jobs including substitute teaching and a brief stint in the retail fitness business (which was a miserable experience for him) to help defray the exorbitant costs of “the illnesses.” I felt like such a burden as he also struggled to balance graduate school with all else he had to do. His goal was to finish as quickly as possible so he could get “a job with benefits” to better afford his wife’s illness.

There were plenty of physical, material, and financial losses but the most gut wrenching, painful loss in this whole ordeal has been the loss of our life dreams and plans. We stopped talking to adoption agencies as we realized our hope to adopt a child in need of a loving family, was no longer a possibility. Book projects and lecture series had to be canceled and our dream to travel one day to Ireland and Egypt vaporized. After 20 years of living in a “home,” we struggled to live in an apartment with carpet that left my immune system even weaker due to newly acquired chemical and allergy sensitivities. Our hopes to help our daughter through college were relegated to small tokens here and there and her relying heavily on some scholarship money and school loans. The regular donations we made to charities that were near and dear to our hearts, shrunk to small random tokens, and we actually debated whether or not to ask one of these organizations for help in our struggle.

We had always leaned upon our faith for strength but at times even that seemed to fail us. We believed in thinking and speaking positive affirmations and still, after everything, believe in the power of loving thoughts and prayer. When one visit to the ER ended up in a week’s stay at a hospital where I was placed (against our better wishes) upon extremely high doses of prednisone, the devastating side effects seemed to be more than we could bear. My once healthy bones became so brittle that after 6 months, spontaneous fractures had occurred in my hip, ribs, and low back, and I was no longer able to share that simple but sweet evening walk with my husband. My new mode of activity was relegated to a wheelchair or walker. William printed a poster with a photo of me from a nutrition & cooking workshop event I presented a couple of years earlier (featuring a much leaner, fitter, and happier “Before Prednisone” me) and placed it on our bedroom door. The caption read, “This is The REAL You!” But after surgery for cataracts and sobering brushes with breathtaking heart pains – later diagnosed as “unstable angina” (more damaging effects of prednisone) we came to a moment of reckoning; I was probably never going to feel, be, or look, like that woman in the photo again. We sadly agreed to say good-bye to that woman that I had been for most of my life, and threw away that poster. We also realized that we were saying good-bye to most of the dreams we had had for the way our lives would work out. It was time to “put to rest” those plans and to allow ourselves to openly grieve those losses. At that time there was a mini-series on television I was watching called Small Island (PBS 2009) and one of the main characters said, “The pain of lost dreams is too much for any human soul to bear.” I cried from the depths of my soul and from every place in my heart as I thought of those words and said “good-bye” to our own lost dreams.

The grieving process has taken some time and still ebbs and flows like the tide, but we’ve slowly begun to embrace the “Easter Factor.” The only salvation from the death of our life dreams is the birth of new life dreams. While it’s essential to experience our grief over such losses, it does not mean that we have to lose all hope. In fact, it is even the smallest glimmer of hope that can give us the strength to rise up from those ashes of death and resurrect new dreams…to birth new life plans. As time unfolds, we are learning to form new possibilities for our lives; still allowing for the miracle of healing while also taking into consideration what we have here and now.

Wellness Wishes,

Jamey

After Thoughts

Has an illness, injury, or other set-back caused you (and your loved ones) to lose sight of your life dreams? How have you handled this loss? Have you been able to resurrect or re-birth new dreams?

We welcome your insights and comments.

Paralysis of the Spirit

2011-04-18T12:52:00.000-07:00

Deep depression and high anxiety can feel like paralysis of the spirit. When you're deeply depressed you don't want to go anywhere, do anything, feel hopeless, and you can feel numb to even the things that normally give you great joy. When you are feeling highly anxious, you can feel emotinally off balance, afraid, and small things become seemingly huge and insurmountable problems that you feel are all stacked up in a way that sweeps over you like a tsunami.

Sometimes you can shake it off and sometimes you can't. When you can't it's time to call upon people who love you and inspire you. If that's not possible, or not working, perhaps it's time for a psychotherapist to help you navigate your way back out of the dark. Don't let depression and anxiety shroud you like a wet blanket because they have a way of gaining momentum and pulling you into a downward spiral. No matter what troubles you, there is a pathway back to feeling better. Reach out for a helping hand.

-William

February 2011 Telephone Support Group Discussion Recording

2011-03-27T11:59:00.000-07:00

Here's the link for the February, 2011 telephone support group call. Jamey is facilitating a discussion on the importance of building a team of people around you who can support you in the various ways you will need help while living with chronic illness. Pardon the gap on the audio when I start talking the first time, had a glitch for a moment.

The call is one hour and you can click here to listen Feb 2011 Telephone Support Group Recording

Do your friends and family "get it"?

2011-02-20T09:05:00.000-08:00

Do your friends and family "get it"? When I say this, my question is, do they understand what you're going through? When it comes to chronic illness, not everybody can understand the experience. Now, I'm not talking about short-term illness, or a surgery that repairs you to almost normal condition followed by a reasonable recovery, ...I'm talking about long-term, life changing, body changing, painful, chronic illness - causing problems that significantly restructure your lifestyle while sending you down a road in life you never even imagined.

I've noticed that generally, three types of people "get it". People who have experienced a chronic illness of the same magnitude, people who have witnessed chronic illness in someone close to their heart and felt their pain, and people who are highly empathetic types.

Why do some people "get it" and others don't? In our telephone based support group's discussion yesterday, I briefly mentioned this and I thought I'd talk about it more here. When you have a chronic illness, after a while, you find out that not everybody can really handle seeing it or even hearing about it. For some people, it's frightening to see you because you represent a stark reality to them, the reality that it could happen to them. They too could get sick and lose everything. For others, there's the the lack of understanding about some illnesses, especially if they aren't well known or are controversial. Some others don't mean any harm, they just don't have even the most remote idea of what you're living with.

...so what can you do? Where does this leave the person with an illness, where does this leave caregivers, or friends who do understand what's going on? Well, you have to realize and accept that there are those who you can count on to understand and those who you can't count on to understand. You can give information such as websites, books, or television specials to people to see for themselves but that doesn't convince everyone.

Once you know who will "get it" and who won't, you can save yourself a lot of grief but turning your attention and energy toward those who will support you. I truly hope you have a network of people in your life who understand what you're going throuigh. But I know many of you find yourselves with less friends and family supporters now than you have had at other times in your life.... so spend time with the people who do understand you because they are truly a treasure and you will find them a tremendous source of inspiration, hope, and warmth.

-William July

Hope is the oxygen of the soul

2011-02-10T08:41:00.000-08:00

When it comes to managing an illness, like any other big task in life, HOPE is the energy and you will need to power up your engines, day to day and moment to moment. Hope is the oxygen of the soul.

When we have hope it gives us the ability to keep moving forward, even when we don't want to - or when we feel stuck in a place that seems to have finally worn us down to nothing. When medical bills are piling up bigger than the mailbox can hold, when prescription costs keep rising, as you battle with insurance companies about denials or shrinking coverage, when yet another diagnostic setback occurs, as well as dealing with the basic day-to-day survival issues you may have,....

...try to hang on to some hope, even if it is the most teenie tiny spark of hope. It energizes us mentally, physically, and spiritually. ....so don't give up hope. Even when you feel overwhelmed, keep at least a little fire of hope burning so it can once again burn as a fire in your heart and soul.

-William July

Welcome to Life Beyond Illness!

2011-01-23T12:43:00.000-08:00

We are excited to share this blogging experience with you. This is the place where you will be understood, feel empathy, and get fresh ideas for facing the challenges of illness in your life or life in the role of a caregiver for a loved one or friend.

You'll find the coming articles to be a variety of postings that will be inspirational, emotionally impacting, and even comical. Consider this YOUR place to feel understood.

We KNOW what you're going through because we're there with you too...

William & Jamey
Couplesfacingillness.com