I wonder who will be next...
In 2000 I was driving with my younger sister Maria, on the way home from the funeral of another sister who just died of cancer. Maria turned to be and said "I wonder who will be next." I asked what she meant. "Well mum, dad and Theresa all died of cancer, which one of us is next." It's a conversation I have remembered and made me stop and think. In late 2010 it was the turn of both Maria and an older sister Valerie to get breast cancer. I thought how can one family be so unlucky. With treatment and a lot of good thoughts and prayers I'm pleased to tell you both are in remission, but Maria is currently having more test carried out, because traces of cancer appeared in her neck. Any health condition, life threatening, serious or not, has the effect of a pebble hitting water as the ripples of water travel outwards. Its difficult to get your head around what is happening, having to learn new medical jargon, and the medical system. It's also hard to know what to say to the people with the problem and I think its hard for those with it to know what to say to others. Once the shock is over, and the emotions are slowing down, its about putting on the business head as Maria calls it to help you manage the up-and-coming changes in the persons life, family, friends and even works colleagues. I'm lucky that I work in pain self-management and been able to support both my sisters and many others to 'put the business head on', develop simple and effective self-management skills. If your going through a rough time learning how to live with pain or a long-term condition, be patient with yourself, work with your health care provider as a team and of course 'put the business head on'. Peter MooreAdd a comment
It never goes away...
This morning I woke somewhere between 6:00 and 6:30 AM. I do not know the reason I woke. I had only been "asleep" for about five hours, maybe less. I went to "bed" at just about 11:30 PM. I cannot see in the mornings, so everything was a myriad of light and dark, without color. I cannot hear normal sounds in the morning. I only hear a combination of ocean roar, antique radio and television static and my own heartbeat as loud as Poe's Telltale heart. I lay there on my bed staring up, as even rolling over to get out of bed can take ten times longer. I wait until there is a lull between the three sounds and my eyes can see more than dark and light.
By that time it was 7:00 AM according to the clock. I rolled off the mattress, holding myself up by my bedside table to just put my feet to the floor. I stood up, legs about 2.5 feet apart, feeling like I'd just stood up on knitting needles, points up. From 7:00 AM to 7:15 AM I teetered across my bedroom, using my bed, the chest and dresser and even the wall for support, to reach the bathroom and use facilities. I brushed my hair and braided it in a ten minute process that normally would take me five, even with waist length hair. I put my dentures in after brushing them. I then opened the bathroom door to find clothes.
By 7:20 AM I was finally done with a process that never, prior to 2009, took so long. It took another five minutes to get my morning fiber therapy, which is a type of juice with a fiber pill. I spent ten more minutes sitting down to the computer after rearranging the blanket on my chair. I instantly had to put my legs up. Currently, even at triple the size of type I once read this at, I still can barely focus on this. My fingers hurt, just to press the keys on this keyboard. My arms feel a striking pain from wrist to shoulder. And yes, that darn static sound is still in my ears. It never goes away.
It will take another forty minutes to get up out of my chair, find a fiber or granola bar or something for breakfast, and eat. Music will not drown out the noise. My maintenance meds will not take the pain away. It is two hours before my scheduled time to take them, and I hurt from head to toe. The pain undulates back and forth with miniature explosions of pain in more than one place (base of the skull at my neck, base of my pelvis at my spine, both knees, both hands, and both elbows) if I move back and forth, or side to side. This is why I spend twelve to eighteen hours sitting in a chair, staring at a computer screen.
This just proves part of the reasoning for creating Covenant of Hope Ministries for those of us disabled, disadvantaged, displaced and disenchanted, whether Christian or not.
Laura A. Neff ~Add a comment
Over the 13 years since that fall...
I'm a fairly young 40+ year old woman, a makeup artist and beauty expert. I am also a chronic pain patient who fell down a flight of concrete stairs, during my first Shingles attack, when I was 27. When diagnosed with Shingles, the first thing the doctor told me that it was a stress-related disease caused by the Chicken Pox virus residing at the base of my spine. The second thing he said was that many Shingles patients develop a painful nerve condition called Post Herpetic Neuralgia (PHN) which results in occasional depression. Unfortunately, depression is something most people who have pain and related illnesses have to deal with from time to time.
Then he added that it’s normally “an old person’s disease” and I shouldn’t scratch or even touch the rash if I wanted to avoid developing the excruciating nerve pain. The following week, I had the misfortune of falling directly on it as I bumped and bruised my way down those stairs herniating lumbar and cervical discs, as well as cracking a rib. Over the 13 years since that fall, I’ve had three cervical spine fusions and at least a dozen recurrences of Shingles, which is another thing some doctors still don’t believe is normal, but what’s normal? Is the amount of pain I feel on a daily basis or the amount of surgery I’ve had at my age normal? Is the feeling that bees are stinging my scalp when I’ve spent too much time typing normal? How about bending to pick up my makeup kit causing a rocket blast of pain to shoot up my spine? I guess it’s my version of normal because it’s with me all the time and I just live with it --- or it lives with me. And don’t get me wrong, I’m lucky! I’m walking, talking, creating beauty and writing about it.
It’s changed who I am though, for better or worse – I’d like to think for the better from a creative and empathetic standpoint. I rearranged my life and left the corporate world because sitting at a desk all day was getting too difficult. I chose to pursue a lifelong dream to work in the beauty industry and I’ve spent the last decade making both women and men look great in magazines and for commercials, runway shows and weddings. If I hadn’t fallen, I might never have made the career change. Aches and pains do get the better of me some days (especially in the past year, leading up to and after a major spinal reconstruction that required a 6-month leave from work), but pain has taught me to seek out innovative tools and resources to aid me in my life and my work.
During my recovery, I made the decision to share my experiences and write about beauty survival in a world of pain. While seeking resources for my new blog, I was directed to Heather at Painting Pain. I was immediately amazed at her artistic and empathetic gifts, and her willingness to share them with the rest of us. By painting an image of a person’s pain, she gives all people surviving pain or invisible illnesses a gift – almost an artistic MRI that somehow validates what we fear people will never understand. Thank you to Heather for being an advocate for the community!
RachaelAdd a comment
I will forever wonder how different my life would be if ...
My struggles with chronic pain started on June 15, 2009. I remember the date clearly because this was the day my life changed forever. After a long car drive, the next day I could barely walk. I had pain in my right big toe, foot, groin, hip, buttocks, knee, abdomen and upper back on the opposite side. After 30+ doctor, injections, physical therapy, and all other imaginable tests, I was told that these pains are all in my head and I have to learn to live with my condition since I exhausted all treatment options my medical plan offered. Since the doctors could not diagnose my condition, I was called a liar and a malingerer and treated as a statistic. After a total hysterectomy and arthroscopic hip surgery and a 21 day rehabilitation, I finally have the answer I have been searching for and that answer came from Marianjoy and their very compassionate staff. I have osteoarthritis, right my sacrum pops out of its place, piriformis syndrome, hyper mobile SI joint, SI joint dysfunction, restless leg syndrome, PNE, tenosynovitis, chronic sinusitis, and too many other issues to list here.
The bottom line is that now I have chronic pain because these issues were not treated and acknowledged at the time when they were still in the acute phase and possibly fixable. I am not depressed - I am furious because chronic pain is not visible; therefore it was misdiagnosed, ignored and disregarded by the doctors. Now I can only sit, stand and walk for very short periods of time. I keep building what I call "nests" out of pillows and cushions where I can manage to sit in a semi-reclined position because I can't get comfortable in any position. I spend my full days doing the PT exercises, icing, massaging, resting, stretching and zapping the painful areas with a permanent TENS unit.
I transformed from a fully active person enjoying doing home remodeling, gardening, painting murals into an 80 year old broken and tired soul. As the day goes by, I get slower and slower. My day has two sections: Chronic pain all over during the day and Clonazepam (my "coma" pill) that helps me escape this hell for a few hours during the night. The painful "Groundhog" day starts all over again in the morning. I do not want anyone's pity or empathy. I am tired, broken and I do not have the energy to try to explain my situation to anyone because unless they experienced this "Five alarm red hot chili pepper excruciating constant pain", they cannot relate to it. I am only 47, and I will forever wonder how different my life would be if my doctors would have believed me at the beginning?
I Have An Invisible Disease...
Hi, I’m Beth, I’m 18 years old and was diagnosed with Chronic Lyme Disease just after I turned 16. I can’t tell you when I was infected with this disease but I can tell you when it all began to hit me hard which is when it became chronic. I was 15 years old and a sophomore in high school aiming towards becoming a professional ballet dancer. I think it really hit me when I began to suffer hip pain that October. This is when my life turned upside down.
Once it spread to my knee I began to worry. I went to my primary care doctor who just gave me pain killers that when didn’t work told me, at 15 years old I’d have to live with it for the rest o my life and at this point I couldn’t walk without a limp in my step and the chronic pain. Along with other now obvious symptoms of Lyme Disease he didn’t order any blood tests of any kind. This then led me to seeing two Orthopedic surgeons, one on Cape the other at Boston Children’s Hospital, about 5 physical therapists from both the Cape and Boston area with countless hours of painful physical therapy to so many X-Rays I’ve lost count between those of my knee, hip, shoulder and ankle, all on the right side and two MRIs, both for my hip, one involving a dye injection to the bone which I wish to never repeat again.
All this for no answers. I was beginning to feel complete hopelessness and my symptoms were getting worse. From depression, anorexia, tremors, random rashes, headaches, joint pain, breathing difficulties, panic attacks, short term memory loss and over 30 other symptoms that I thought I was just going to have to deal with for the rest of my life. Up until the new Dr. office I go to just so happens to have a Lyme specialist in that practice and I happen to go see her for my new patient physical and I admit to many of the symptoms she’d name off and the physical Lyme test she orders, along with about 9 other blood tests, a testing for Lyme Disease. Sure enough it came back positive, for both Lyme and a co-infection called Bartonella Disease.
It wasn’t all in my head like I was being told, finally I had an answer. I was rushed in to see her to start treatment right away. So far I have been on antibiotics for 2.5 years, I have gone through different side effects along with the worsening of my symptoms. I am constantly told by Lyme specialists I’ve seen that, “You will get worse before you get better” boy is that true. But, I will get better and I hang on to that every day. I am looking forward to the day I go into remission, yes I could relapse anytime but I am looking forward to the day I don’t feel sick.
I have an invisible disease, but I am not invisible and as long as I am not invisible I will keep fighting and keep spreading the awareness of Chronic Lyme Disease and the fact that it does exist and I am living proof. Yes, I would have probably been able to go off to Boston Ballet if I hadn’t been infected by this disease, but I would most certainly not be the strong, courageous person I am proud to be today.
“It isn't the mountains ahead to climb that wear you out; it's the pebble in your shoe.” Mahummad Ali
My entire future is an unpredictable mountain. Lyme Disease is simply a pebble in my shoe.
BethAdd a comment
The majority of my days are filled with a variety of pain,
When asked to define my disease it seems impossible to explain.
My son is thirteen and the year since my diagnosis is ten,
I understand I had this since birth and there is no cure.
Now, I think back and wonder why pain interfered when my child was so pure,
I accepted my situation and realize that pain will always be part of my life.
These days I pray for less stress as my agony is made greater with strife,
Many of my friends from school are gone now, some by their own hand.
Sadly, very soon people will forget that they even walked this land,
Seeds of comments have passed my lips regarding a bullet to my head.
With my son, husband and so many who love me I don't want to be dead,
Even though fibromyalgia is nightmarish and makes my body hard to live in.
If you are someone who has it, for those who love you, don't let it win!
Michelle D. (Onnembo) ReeseAdd a comment
It is rightfully named the “Suicide Disease”...
The beginning of my journey started approximately 4 years ago when I was casually out walking with a friend. The wind came up and all of a sudden the pain in my face stopped me dead in my tracks. A jolting pain shot through my face in the lower jaw area. It only lasted about 10-30 seconds so naturally after it subsided I did not give it much thought. Of course that was not the end of it.
This pattern of pain onset happened more frequently and started to last longer. Finally one day I was driving with my daughter and as the pain began I started to slow down and pulled over into a rest area and my daughter said to me “What is wrong”? I held up my finger to say hold on a minute because I was completely unable to respond or drive. After about 5 minutes, I told my daughter that it felt like there was an arcing wire in my jaw. So utterly painful, that you cannot do anything except for grip the seat tightly until it passes.
As time went on it became unmanageable. Ibuprofen, 800-1000 mgs was not helping. I attended a birthday party and was sipping my glass of wine when all of a sudden I had a bad attack. I was silent and tears were rolling down my cheeks and the whole room of people were staring at me. My sister-in law said “You need to go see a doctor”! She was right, it was high time I seek professional help.
From there I was diagnosed with Trigeminal Neuralgia and am now being treated with Gabapentin.. Thank God I had an excellent physician's assistant diagnose me because quite honestly, I couldn’t work or communicate or anything else while this pain is active. It is rightfully named the “Suicide Disease”. I truly believe that if I had not had this pain relief that I would seriously be thinking in this manner! I would really like to hear from others with Trigeminal Neuralgia and wonder what kind of perspective they have on this not so common disease!Hopefully, Gabapentin will keep this disease at bay for many more years to come! Without it quality of life suffers!
FranAdd a comment
PAIN is very personal...
People in Pain & The People Who Love Them, PAIN is very personal. Pain does not discriminate, but the people surrounding People in Pain sure as hell seem to. People in Pain are often thought of as whiners or weak - told to suck it up. The reason is that both, yes, both People in Pain and the people around People in Pain suffer. Watching People in Pain is very painful.
Don’t be a hypocrite by thinking your pain is physical therefore it’s more painful. That’s not true. Emotional pain suffered from those around People in Pain can even suffer more. What do we do when we see a starving child on a TV commercial? We change the channel because its too painful. That is pain. Pain spreads. Don’t be foolishly selfish to seek pity because what you are actually doing is just creating more pain. So, the next time you start to complain about your pain, think. Have pain conversations with those who are willing to not change the channel. Besides your health care professional, this website is an excellent place to do it. I’ve been in pain for years. I’ll be back to vent, share experiences and offer ideas.
Karen, Haddam CT
Felt Like I Had Gone to the Seventh Level of Hell...
I just happened to see, that someone posted a link to the About section of this website on my local news station's Facebook page, and I decided to check it out. I have chronic pain and while reading Heather Bolinder's (owner of paintingpain.com) story, it got me thinking about my journey. So, I figured it couldn't hurt - pun, very much intended :-), to share my story with some people other than my doctors and family. I apologize, I'm not really good at spelling and such and have never done anything like this before, but I hope that maybe, I can help someone who's reading my story, as much as it helps me to write it.
I'm one lucky man as far back as I can remember. I always wanted to run heavy equipment and my Aunt's ex-husband's father owned an excavation company. After hanging around my Aunt's house from kindergarten till about the 7th grade, my persistence paid off. Her ex-husband's father, Terry Sr., and his son, Terry Jr., were excellent, but very demanding teacher's. They taught me to work very hard every day and made me master every tool and task. They taught me how to run equipment and to drive a dump truck, demanding as near perfection as I could master.
August 17th, 2004, I remember this day vividly, looking back, this would become the worst day of my life. Close to the end of the day we were digging for and installing the round concrete bases that light-pole's sit on. I was running back and forth on this huge parking lot marking, measuring, compacting and "shoveling" this 3 inch crushed rock the engineer's said we had to use, brutal stuff. I think I broke 3 shovels that day. My back muscles were starting to get really sore from all the lifting and tugging.
I just got done back filling one base and was jogging down the waist-deep trench with this 80-90 pound steel spreader bar. I had the momentum to run. When I got to the end of the trench, I planted and pushed off with my right leg to hop out, but I didn't quite plant my left foot on the solid ground. Instead, I just fell on some loose dirt and was suddenly struck with an explosive - Hot pain was felt in the left side of my back, near my spine and pelvis and into my hips.
This was the worst day of my life; I was in more pain than anyone could be in, short of being shot and I turned to alcohol. Although now, I am almost two years sober. For several days I was in extreme pain, slowly I could walk again.
All I wanted to do was work and I wasn't going to let pain stop me. Right before I was released from light duty, I was at a specialist's office waiting to get my 3rd injection in my back. I saw this man in his early 30's limping very badly with this awful grim face with each slow, short step he took. I remember feeling like a complete jerk for "complaining" about all the pain I was in - I wasn't feeling as bad as this guy.
Over a year later, I got in a horrific wreck driving a dump truck and hurt my back even more. For the next two years, I kept throwing my back out and would be lame for weeks at a time.
One day, I got up to go to work and like Heather Bolinder, owner of paintingpain.com, I suddenly was paralyzed with pain, this time in both legs. The MRI showed a hernia at L4-L5 and at L5-S1, and after reviewing the three prior MRI's, I was told, L5-S1 would never be healed. I felt like I had gone to the seventh level of hell. It was all degenerating extremely fast. I could no longer do my dream job.
My new pain doctors had me scheduled for an injection. The doctor fumbled my injection, sticking the needle too far in. I can't walk more than 10 feet and limped on my right side. I ended up seeing a neurosurgeon who performed a microdiskectomy and laminectomy, but awful luck hit again, I tore my durra and started to leak spinal fluid. I was hospitalized with a spinal drain.
Last summer, I was trying to pick up my three month old daughter, who was premature and all of 8 pounds, the paralyzing pain reared its ugly head. The doctors now say both of my disks, L4-L5 and L5-S1 are so badly degenerated, I need a two level fusion. I'm 26, I have to wait 5 to 10 years to insure the disks are at the right levels - the success rate for a two level fusion at my age, has a high failure rate.
I'm married with three absolutely perfect kids; a 4 year old boy, 2 1/2 year old girl and an 8 month old girl that makes me the happiest man in the world.
I'm currently fighting my way through the disability process and I really miss the work I use to do. Although I have many reasons to be very happy, sometime's when I look in the mirror, I see that man in his early 30's limping very badly with this awful grim face - I went from comparing my pain to someone "worse-off" to living it, less than eight years later.
We all need time to heal.
Ryan C.Add a comment
- Soon I will be old enough to collect Social Security...
- Pain when a drunk driver plows over my fourteen year old son...
- Two Steps Forward....
- The Pain Unseen
- Pudendal Neuralgia Is....
- Scoliosis, Rheumatoid Arthritis, Sacroiliac Diseases, Osteoarthritis...
- Major Depression and Anxiety. I am constantly fatigued...
- He called the top orthopedic surgeon at Mass General Hospital...