WebMD Pain Coach


 

I found this wonderful ap and would like to share it with you.  Hope this is someone out there that may find this useful!!  Well done Apple!

WebMD Pain Coach 

By WebMD           http://www.webmd.com/mobile

 

Description

WebMD Pain Coach™ offers a holistic approach to balancing lifestyle with chronic pain conditions to help inspire a better day. WebMD’s new app is a mobile companion to help you through daily health and wellness choices so you can better manage your chronic pain. Enjoy a personalized experience as physician-reviewed tips related to your specific condition are delivered daily to you. WebMD Pain Coach™ puts you in control of your lifestyle choices so you can review personal patterns to understand triggers, set goals, and easily share progress with your physician.

WebMD Pain Coach™ is specially designed and customized for people with the following chronic pain conditions:
✓ Back pain
✓ Neck pain
✓ Nerve pain
✓ Fibromyalgia
✓ Migraine
✓ Osteoarthritis
✓ Rheumatoid arthritis

If your chronic pain condition is not listed above, you can still use the app to track pain, set goals, and get pain management tips, articles, slideshows and videos.

When you first download and use WebMD Pain Coach™, you are asked to select your chronic pain condition(s), as well as symptoms, triggers and treatments that apply to your condition(s). If privacy is important, the option to set a four digit PIN will keep your information secure. WebMD’s drug look-up allows you to search and select over-the-counter and prescribed medications, and record the dosage of each drug selected.

WebMD Pain Coach™ is organized into four easy-to-use sections:
✓ JOURNAL
The Journal section allows you to quickly and easily record your day. A separate Journal screen exists for each day. Once entries are created for multiple days, flip back to see your pain history. Turn your phone sideways to generate your Pain Coach™ Report: a historical chart that plots your general well-being against your pain levels while listing your most common symptoms, triggers and treatments. Tap on a day to view a snapshot of your pain history and export your Pain Coach™ Report to PDF and email it to yourself or your physician.
♦ Record how you generally feel each day by sliding the Pain Coach™ ‘Well Being Belt.’
♦ Log a pain entry to track details surrounding pain: pain level from 1-10, symptoms, triggers, treatments and notes.
♦ Reminder to log a pain entry by receiving a Pain Coach™ notification once a day.
♦ View a new Daily Tip that is personalized to your condition(s), triggers and treatments.
♦ If you set goals to better manage pain, tap ‘Today’s Goals’ to check off achieved goals.

✓ Goals
The Goals section allows you to browse and select physician-approved goals from five lifestyle categories related to your pain condition(s): Food, Rest, Exercise, Mood, and Treatments. You can also create your own goals. Each related tip can be viewed before selecting a goal. The goal duration can be set from one day to one year.
♦ The green ribbon at the top of the Goals screen indicates the percent completion rate for active goals.
♦ Once a goal is selected, tap ‘My Goals’ to view Goal Activity for active and completed goals.
♦ If you have more than one chronic pain condition, the goal that is suggested for a specific condition is indicated.

✓ Library
The Library section contains all of the critical, physician-approved content relevant to your condition(s) and pain management. The Library contains hundreds of articles, videos, slideshows and quizzes. All articles are available for offline reading.
♦ Library content contains links to WebMD’s mobile website.
♦ The Library is searchable.
♦ Share all Library content via email, Facebook or Twitter.

✓ Tips
The Tips section features hundreds of ‘bite-sized’ tips that are matched with goals and organized into the same five lifestyle categories: Food, Rest, Exercise, Mood and Treatments. Each goal has between 3-10 supporting tips.
♦ Search for a specific tip.
♦ After reading a tip, view the goal related to the tip, or view related Library articles.

…More

iPhone Screenshots

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Customer Reviews

Great app

by Dragon Slayer 1

What a game changer. I can finally define my pain in my terms.

brilliant app!

by pyroclasticlux

excellent for tracking my migraines & other chronic pain. it’s a well thought-out app & is very user-friendly! i definitely recommend this programme; it is both easy to use and comprehensive.

Great little app for my neck pain

by Grimlock2011

On a recent ride to Cheyenne i bit it and was in the hospital for 2 days. Some disks popped in my neck, and let me tell you, goody’s powder wasn’t cutting it. i like this app because it helps me think about ways to feel better and i can also show my doctor my pain charts. looking foward to rejoining the boys and riding again soon! Get this app you won’t be sorry.

 

Is there pain after death – post 2


A pensive Vic…. 2011

Two days ago I reblogged a post “Is there pain after death” written by a Dr James Salwitz.  This post elicited some comments – mainly from Vic.  Vic has started reading the odd post of my blog.  In a way I am truly okay with it but on the other hand I find it difficult to blog my fears and emotions knowing that Vic may read the post.  I find that I have become guarded in what I am writing.  I am thinking that I should blog about stuff that may allay Vic’s fears….

Yesterday Vic asked  “Mommy, I know what we believe in but what if there is more pain after I died?”

“You read my blog?” I asked.

“Yes” Vic replied.

“Sweetie, I believe that when the time comes our loved ones will be our guardian angels and hold our hands whilst we cross over….”

“I know that Mommy but what if I am still in pain… What if the pain does not stop?”

“Sweetie, the pain that continues after death is the emotional pain that belong to the loved ones that are left behind.  That is what the post is about…..”

Tears welled up in Vic’s eyes and she said “I know that Mommy but what if I am still in pain… What if the pain does not stop?  What if your pain does not stop?”

Andrew, http://lymphomajourney.wordpress.com/, commented as follows… “Even before one leaves, I always thought it more difficult on my family to watch me go through what was pretty aggressive treatment than on me.” 

sbcallahan, http://thedrsays.org commented…”this is one of the difficult things about being the one who leaves. to know that your loved ones are going to suffer more than they already have is heartbreaking.”

“how to die? I have watched many die over the years and the range is as you would imagine. there were those that just could not let go and suffered every indignity to their body and soul. of course others went quietly with love around them. I have not decided if I want to be alone or with loved ones by my side. is there a way to make it easier for them? would they rather receive a phone call with the news or be at bedside? either way it will hurt them, not me of course as I am the one leaving. I would be lying if I said I don’t think of how I will miss so much. the thing is I have had so much, so much more than others and it seems selfish to complain. what they will go through is tremendous compared to what I will go through. I will sleep eternally and they will live. the best I can hope for them is peace of mind and future happiness. I want them to think of me and smile as I do now thinking of them.”  http://thedrsays.org/2011/03/

I am beginning to think it is easier to be the person leaving than the one being left. I have always known that about relationships and breaking up but now realize that it is the same when someone you love is dying. My husband became suddenly angry and I knew there was something wrong. it is so unlike him to get angry over nothing that I was completely off guard. we had been watching the movie “steel magnolia’s” and he asked me what Julia Roberts was dying from and I told him kidney failure. later when he was able to talk, he shared that it had reminded him of my own kidney failure and near death. we live in limbo waiting each week for blood tests to know if I am back in failure or good for a few more days. I don’t really think about it and when he shared his fear my heart ached. The sad thing is I have no fear and realize more and more how hard this is for him. I know that he will be fine in the end but it is hard for him to imagine he will be fine without me. It is so much harder to be the one being left behind. http://thedrsays.org/2011/03/25/the-one/

Vic so often tells me how worried she is about the family.  She worries about how the boys, her dad and I will cope.  Whether we will cope…. whether we will be able to get over her eventual passing….  Andrew and sbcallahan write about their fears… for their loved ones.  It is a fear that all terminally ill people appear to have.

My Mom died a bad death!  Two weeks after major surgery she died an agonizing death from septicemia   We could see the gangrene spread…. She was burning up with fever and no amount of pain medication could dull or relieve the pain.  God alone knows what went through her mind because she was ventilated.  When my Mom finally died we were so relieved.  We were relieved that her suffering was over.  We were traumatized by the dying process not her death.

As a family we have lived with Vic’s pain and her excruciatingly slow journey towards death for the past eleven years.  For eleven years we have heard her scream with pain, moan with discomfort, we hold her hair back when she is doubled up over a toilet bowel, vomiting until she fractures a vertebrae.  We have nursed open wounds, changed colostomy bags…. We have watched our daughter and mother suffer the most horrendous symptoms.

So baby, if you read this post, know that we will miss you.  We don’t want you to leave us behind but we want your suffering to end.  We will continue to love you until we are reunited one day.  You have to trust us that you will always be “my baby” and the boys’ mummy.  But know that we will be grateful when your little body is freed from its pain and suffering.  You will be at peace…  You will not suffer more pain after death.  We will mourn you but we will also be at peace…  We will think of you and smile…

It is okay to let go my angel child.

Sometimes the pain’s too strong to bare…and life gets so hard you just don’t care.


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http//www.scientificamerican.com

Today I read heart wrenching posts of bloggers who are in so much pain!  Katie Mitchell’s post filled me with a deep-seated sadness and a horrible, familiar feeling of helplessness.  I am so sad and angry for all the pain out there.

Katie blogs as follows:  Where do I even begin? I am hollow, at my lowest and very near the end of my rope. I’ve been in bone shattering pain now for a week and three days. Not my daily chronic pain, but a pain that is making me lose all faith in ever getting better, or ever surviving long enough to find out. I’m angry at the world and everyone in it, but most of all, I’m angry at a body that is failing me and falling apart.

I’m not suicidal, in fact it’s probably just the very opposite; I’m trying with all that’s left of my strength and going through hell just to live. When I have those thoughts; the ones where I do wish to no longer exist, it’s not because I want to die, it’s because I want need the pain to end.

I’ve been on a much higher dose of my pain meds then I care to be, but even with that I’m barely hanging on. If it weren’t for it though, I would’ve had no alternative but to check myself into the hospital and hope that they would help. I don’t even know if they would do anything for me. The experiences I’ve had with the hospital in relation to pain have never been pleasant or successful. At the most, you get a shot of pain killer and are sent on your way, no thought given to what happens when the medication wears off. Not to mention you’re often treated like a wussy or drug seeker.

My ribs slid back into place about a week ago only to subluxate once again not even 24 hours later. I still can’t bend, can’t breathe deep, dressing myself is a balancing act, showering is difficult and painful. And, I’m scared. Scared that this is a new stage in the progression of my disorder and the deterioration of everything holding my body together. I’m scared that they’re going to stay this way and that I’m going to have to learn to live with this new pain, a pain that made me wonder more than ever how I would ever survive to meet tomorrow. My tailbone is also dislocated or partially dislocated. It’s been doing this sporadically since I was about 10 or so but it’s also very painful none the less.

And then there’s my back. I almost get stuck in my bed everyday when I wake up. Between my ribs and the back pain I can’t sit up to get out of it. Half of the time I’ve been having to roll onto my hands and knees on the floor and struggle up from there. My toes and feet are constantly numb or tingling, my hips and legs are cramping and there’s a constant stabbing pain in my back. I have a doctor appointment on Thursday but I’m considering calling in today to see if they have an earlier opening. I don’t know what to do anymore, I can’t take it. It’s taken me four days of trying, to be able to write this. But I needed to unload and write out some of my thought and feelings. What else am I to do with them?

I’m sad. I’m tired. I have the desire and need to be comforted but am in too much pain to want to be touched. I’m uncomfortable with physical vulnerability but don’t have the energy or will to put on a brave face right now. And then, like I mentioned above; I’m angry and testy but don’t want to take out my pain on anyone that doesn’t deserve it. So, as much as it makes things worse I’ve still been isolating myself.

In the end, pain is a lonely thing.

http://connectivetissuedisorders.wordpress.com/2012/10/01/treading-water

I shivered when I read this post and for a while I was blinded by tears.  I do not cry easily. I reread the post…. How is it possible that one young person can suffer so much pain?

It is a basic human right for chronically ill patients to receive palliative care services while they are receiving life-prolonging or curative treatments…. Why is pain treated with so much disregard by the medical profession?  Is it because people on the other side of the prescription pad are inadequately trained or like me they have never experienced pain?

Doctors are taught that pain is a sign of illness.  In their quest to find and treat the cause, they often neglect to treat the pain.

Vic was treated by the pain clinic for the past five years.  The head of the department is a professor of Anesthesiology.  Vic’s surgeon has been operating on her for the past 10 years and performed at least 60 of her 80 operations.  He knows how little of her intestines are left….  So does the professor.  Yet both these doctors chose to ignore this important factor when managing Vic’s pain.

At best her absorption is extremely poor and we constantly battle malnutrition.  We fluctuate between mechanical obstructions and diarrhoea.  400mg of MST twice per day just accumulates above the heavy fecal loading or is literally being flushed from her system within a very short period of time.  Combine this with severe vomiting bouts…. Often we lose tablets, either end, which is still totally intact…. Maybe the Jurnista worked because it is a slow release tablet that absorbs differently to the MST.

“In simple mechanical obstruction, blockage occurs without vascular compromise. Ingested fluid and food, digestive secretions, and gas accumulate above the obstruction. The proximal bowel distends, and the distal segment collapses. The normal secretory and absorptive functions of the mucosa are depressed, and the bowel wall becomes edematous and congested. Severe intestinal distention is self-perpetuating and progressive, intensifying the peristaltic and secretory derangements and increasing the risks of dehydration and progression to strangulating obstruction.” http://www.merckmanuals.com/professional/gastrointestinal_disorders/acute_abdomen_and_surgical_gastroenterology/

intestinal_obstruction.html#v890928

Now with Hospice the team has realized that her tissue is too poor for subcutaneous morphine, tablets don’t absorb, morphine patches cause skin irritation….Now I administer morphine injections into the skin.  At least the Hospice team is looking for a solution and we have had more good days in two weeks than we had in six months!

In my book every single person is entitled to proper pain management.  In the past, management of chronic pain has often produced unsatisfactory results. For approximately 80% of the world’s population, pain relief when needed, is a right yet to be realized.  One of the chief reasons for this stems from misunderstandings about the pharmacological characteristics of morphine and other opiates.  Furthermore, in an attempt to limit the opium trade, barriers were put into place, to prevent people from accessing pain medications.

Morphine is an opioid.  A psychoactive chemical which has been used for centuries to treat acute pain….

A number of medical schools no longer teach opioid prescribing. Doctors inexperienced in the use of opioids do not know how to initiate, titrate, and withdraw the medication. Faced with undesirable outcomes in patients (e.g., respiratory depression after a rapid increase in dose), physicians have become reluctant to prescribe these medicines. Recent studies have proved conclusively that as long as the patient is in pain they would not develop a psychological dependence on the drug.  It is encouraging that the recent increased interest in the clinical pharmacology of symptom control has demonstrated that it is possible to use morphine safely and effectively, even in patients with advanced disease.

I have seen with Vic that freedom from pain actually prolongs life and allows the body to heal or recuperate.  It is virtually impossible for Vic to die of a morphine overdose even if the dosage is increased substantially.

The human suffering due to lack of pain relief is an affront to human dignity!

In South Africa a large portion of our population is HIV positive.  They live in rural areas where there are no doctors or pharmacies.  If they are lucky there may be a clinic with a nurse….  A doctor’s prescription is needed for morphine.  No doctor = no morphine = painful death.  In syrup form it is cheap!

What a cruel world we live in! When a young girl is fearful of seeking medical help in a first-world country it is truly a disgrace.   “I would’ve had no alternative but to check myself into the hospital and hope that they would help. I don’t even know if they would do anything for me. The experiences I’ve had with the hospital in relation to pain have never been pleasant or successful. At the most, you get a shot of pain killer and are sent on your way, no thought given to what happens when the medication wears off. Not to mention you’re often treated like a wussy or drug seeker.”

I am grateful to the Hospice team!  I am grateful that Vic has been spared further suffering.  We cannot prevent death only unnecessary suffering!

“Sometimes the pain’s too strong to bare…and life gets so hard you just don’t care.  You feel so alone you just sit and cry…every second you wish you could die.  Then you start thinking who would care…if one day they woke up-and you weren’t there.”   Unknown

I would like to list some of the wonderful blogs on pain that I follow slavishly.

http://fullcircledme.wordpress.com/2012/09/20/myths-about-pain-meds-vs-addiction-or-dependence

http://now.tufts.edu/articles/world-hurt-pain

http://ohwhatapain.wordpress.com/being-treated-like-an-addict

http://ohwhatapain.wordpress.com/2012/09/26/flares

http://walkingthroughpain.wordpress.com/2012/09/28/ahhhhhhh/

http://connectivetissuedisorders.wordpress.com/

Mommy, I thought I had more time….


“You matter because of who you are. You matter to the last moment of your life, and we will do all we can , not only to help you die peacefully, but also to live until you die.”

–Dame Cicely Saunders

Mommy, I thought I had more time…..

Palliative care


Vic and her mommy

Today, having a loved one live with a terminal diagnosis for an extended period of time is fast replacing sudden and unexpected death as the norm. Ultimately, many will reach a point where medical technology may be able to keep them alive but can neither restore their health nor even improve their condition.  In actual fact they are merely kept breathing….   More treatment will only prolong their dying.

It is at this point that patients and families face difficult choices about the kind of care they want….

I have seen studies that clearly show that patients who access Hospice, earlier in the disease process, actually live longer than expected. Ironically it seems that Hospice, with its emphasis on quality of life, actually keeps people going. When people who are ill have good pain and symptom control and their caregivers are well supported, they don’t want to give up; they want to live longer.

Vic has reached a stage in her life where she wants to die.  She has absolutely no quality of life and is growing weaker by the day. Everyday Vic loses a little more of her independence and dignity.  Vic needs help with almost all her day-to-day activities.

Opinion polls decisively show that most people would prefer to die at home, free from pain and surrounded by their loved ones.  Sadly people often die alone in hospitals or nursing homes, attached to life support machines they do not want.  It is also a fact thatmany terminally ill people die excruciating painful deaths because, even in death, their doctors suffer from Opiophobia…

“Opiophobia is the syndrome of failure to administer adequate opioid analgesics because of the fear of producing addiction or toxicity. The etiology of opiophobia is multifactorial: Peer pressure (provider and patient), regulatory agency pressure (real or perceived), and lack of education on opioids and the fundamentals of pain management all contribute to its persistence…. All of these factors contribute to the underuse of these relatively simple and very effective medications, due to no fault of the patients. ” University of Wisconsin textbook on pain medicine, Bonica’s Management of Pain, 3rd edition:

I promised Vic no more surgery and no more hospitals. https://tersiaburger.com/2012/06/01/1-6-2012 The only humane option left is Hospice.  I have been fighting for Hospice to get involved with Vic’s palliative care not to hasten her death but to enhance her quality of life!

WHAT IS PALLIATIVE CARE

Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. Palliative care:

  • provides relief from pain and other distressing symptoms;
  • affirms life and regards dying as a normal process;
  • intends neither to hasten or postpone death;
  • integrates the psychological and spiritual aspects of patient care;
  • offers a support system to help patients live as actively as possible until death;
  • offers a support system to help the family cope during the patients illness and in their own bereavement;
  • uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated;
  • will enhance quality of life, and may also positively influence the course of illness;
  • is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications. http://www.hospicepalliativecaresa.co.za/What_is_palliative_care.html

WHAT TO EXPECT
Should the patient be accepted onto a hospice programme, the Hospice team together with the patient will develop a tailor-made plan care plan. Usually patients are visited by the hospice staff in their own homes. The care and support of the hospice team will help the patient and family as they navigate their way through the challenges of living with a life-limiting condition.

The main things hospice can help with are:

  • pain and symptom control
  • psycho-social support and advise
  • spiritual support
  • emotional support
  • bereavement support
  • equipment (wheelchairs etc)

The challenges that we as a family must face with Vic’s terminal diagnosis is complex. It includes evolving new structures and dynamics as the person we love very, very slowly slips away.

Last night and again tonight, Vic said to me “Mommy, I know you think I will live forever but you must prepare yourself because I know how my body feels…”

As a family we have learnt to cope with setbacks, Vic’s health steadily deteriorating and  periods of seeming remission. This “extended grief”, wears us down and leads to the horrible realization that we sometimes find ourselves wishing that the process would end…. I have often said “Sometimes I am scared Vic will never die…”  I do not want my child to die.  I merely want her suffering to END!

As a family we have moved into a phase where the stress of the situation can no longer be ignored.  It is making all of us ill.

This week has been an emotional roller coaster!  On Tuesday I cried in front of a strange doctor.  Wednesday I felt that I was losing the plot.  I was unable to function on a professional level.   My mind was absolutely fogged over.  Thursday an angel named Christa evaluated Vic and I went from absolute despair to exuberance when I heard that Hospice’s Doctor would evaluate Vic on Monday morning…

Today when Jared and I were waiting to see the doctor after his CT scan we had a long chat…

He said “Oumie I can see when you are stressed.  You zone out…  You have been very stressed this week….”

“Yeah” I said.  “I have been a little stressed this week.”

“Since you starting writing your blog you no longer wear a mask Oumie…You handled the stress better before!  You always smiled.”

OMG.  What am I doing to the boys?  I realized today that I have to be more careful.  The mask has to go back on.  I scare them when I show my stress.  Imagine what it would do to them if they read my blog…..  Thank God they don’t!

I left the best for last though – no immediate lymph biopsy will be done on Jared.  The lymph nodes are definitely enlarged but there has been no adverse change in the past two and a half weeks.   We will give his kidney some time to heal and the CT scan will be repeated again in two months time.

I am feeling so positive!

There is a God and I thank him for Jared’s outcome, Hospice intervention, Baby Isak and my wonderful, loving family.  I pray that He will enfold Vic and the boys in His Mercy and Grace.  I pray for my mask!

Vicky Qualifies as a Hospice Candidate…


Schedule 6 medication – 28 days supply

Just seconds ago I was thinking “What a glorious wonderful day…” when the thought crossed my mind “Hang on a minute…. It is a glorious day because Hospice have agreed to evaluate my sick child????”

Hello!!! How sick is that that our lives has degenerated into a hellhole where Hospice is good news!!

This morning Christa, an internationally acclaimed pain expert, came to evaluate Vic at home. She spent a lot of time with Danie and me to build up a case history on Vic. Christa works for Janssen Pharmaceutical Company as a “Medical Scientific Liaison: Pain”… Part of her responsibilities is to liaise and advise the Pain Clinic and Hospice as an expert!

It was as if a floodgate opened. I rambled on about Vic’s (health) background, history, symptoms, operations, treatment and decisions. I showed X-Rays and photo’s of Vic abdomen at different stages of Vic’s 10 year journey. She was shocked to hear that Vic spends 95% of her life in bed. That she is too tired to even read.

Rest of Vic’s medication – decanted

Christa told me that Prof Froehlich had phoned her the previous day and told her that “Mrs Bruce’s mom is in trouble…”  https://tersiaburger.com/2012/09/12/pain-clinic-11-9

I should have cried earlier.  I have been fighting for months to achieve this!  Then when I give up my fear, exhaustion, stress and defeat obviously showed… Maybe it is the new doctor who has not been desensitized to the suffering of the patients… Maybe there is a God of Mercy after all.

After chatting to us and taking copious notes, we got into Vic’s pain medication regime. I told her about this wonder drug, Jurnista. She just smiled and told me that Janssen’s manufacture Jurnista!  I am amazed that she consults for the Pain Clinic and Hospice and they don’t have the budget to supply Jurnista!

I eventually took her to meet Vic. (Shame poor soul got such a fright when I woke her). She examined Vic briefly, spoke some and made wonderful sympathetic sounds. I introduced her to Jared who was in bed as he was in too much pain to go to school.

She explained to Jared that she was here to evaluate his mom and would be making a recommendation that Vic be accepted into the Hospice program. She also told him we, as a family, needed to have some counselling. The psychiatrist would come to our home…. Jared told her that his pastor’s wife was coming to see him in the afternoon…. I smiled. I know the boys so well. They automatically put up barriers when they hear the word “counselling”….  (It was really the truth – Mrs Pastor did visit.  First visit in 4 years from Vic’s church…)

Christa wished Vic well, hugged me and said “Vicky clearly qualifies for palliative care. I will talk to the Hospice Palliative Care doctor and recommend that they accept Vicky into the program. I will phone you this afternoon”

At 5 pm this afternoon Christa phoned to confirm that the Hospice doctor will evaluate Vic on Monday morning at 7 am!  I read somewhere that terminally ill people often feel that upon entering the Hospice program they go from “dying from….” to “living with….”  It is my heartfelt prayer that this will be the case with Vic.

Tomorrow morning at 9 o’clock my beautiful Jared will go for his CT scan. At 12 O clock we will see the surgeon.

I have stopped thinking and researching Lymphoma.  My heart has stopped beating. It is pounding.

Jared at a guitar recital in 2011

September and awareness of pain


As a mother of a terminally ill child, who suffers debilitating chronic pain, I have researched pain extensively.  I have argued with physicians and meet with pain specialists at the pain clinic every month.  I have bullied hospital nursing staff.  I have witnessed and lived my child screaming like a wounded animal from pain….. Doctors telling her that she is a morphine addict and pharmacists double-checking and verifying Vic’s scripts…  

September and awareness of pain.

 

September and awareness of pain


 

The month of September is dedicated to help bring awareness to a very much misunderstood disease, Chronic Pain (C/P). In the USA, Chronic Pain has finally been inducted by the American Medical Association as a disease, with its own diagnostic code even though it encompasses multiple over-lapping conditions and diseases.

As a mother of a terminally ill child, who suffers debilitating chronic pain, I have researched pain extensively.  I have argue
d with physicians and meet with pain specialists at the pain clinic every month.  I have bullied hospital nursing staff.  I have witnessed and lived my child screaming like a wounded animal from pain….. Doctors telling her that she is a morphine addict and pharmacists double-checking and verifying Vic’s scripts…

Yet the levels of Vic’s pain force us to eat humble pie.  We have to go back time after time asking and even begging for pain medication.

Tracy at http://ohwhatapain.wordpress.com/ is a passionate advocate bringing awareness about this chronic illness, and this month she has a special project. Please visit Tracy’s blog. Even if you are not directly involved chances are there is someone in your life that is.  I have a headache (maybe) once a year.  I never have a tummy ache, earache, toe-ache or any ache as a matter of fact.  Yet I am a specialist on the subject of pain…  I will therefore participate as a caregiver of someone who suffers debilitating chronic pain…..

So from Tracy’s Blog this month and all month-long;

 Please answer the following questions:

  1. What condition(s) do you have that have led you to living with chronic pain?

Vic has a frozen abdomen, Osteogenesis Imperfecta, Addisons Disease and severe Endometriosis.

  • Frozen abdomen,” is a condition  in which repeat surgeries to remove the fibrous bands create so much internal scar tissue that further surgical intervention becomes dangerous. Inflammatory conditions like appendicitis, internal infections and abdominal surgeries can cause the abdominal tissues to bind together, forming scars.  Adhesion formation in the abdominal or pelvic cavity can cause debilitating pain, nausea, vomiting, cramping. Patients with intestinal obstruction may experience constipation, diarrhea or a combination of both. In severe cases, adhesions can cause intestinal obstruction, bowel strangulation, complications with childbirth and infertility.
  • Osteogenesis Imperfecta (OI) is a genetic bone disorder characterized by fragile bones that break easily. It is also known as “brittle bone disease.” The term literally means “bone that is imperfectly made from the beginning of life.” A person is born with this disorder and is affected throughout his or her lifetime. http://www.oif.org

The condition arises from problems with the adrenal gland itself, a state referred to as “primary adrenal insufficiency”, and can be caused by damage by the body’s own immune system, certain infections or various rarer causes. Addison’s disease is also known as chronic primary adrenocortical insufficiency, to distinguish it from acute primary adrenocortical insufficiency, most often caused by Waterhouse-Friderichsen syndrome. Addison’s disease should also be distinguished from secondary and tertiary adrenal insufficiency, which are caused by deficiency of ACTH (produced by the pituitary gland) and CRH (produced by the hypothalamus), respectively. Despite this distinction, Addisonian crises can happen in all forms of adrenal insufficiency.

  • Endometriosis A major symptom of endometriosis is recurring pelvic pain. The pain can be mild           to severe cramping that occurs on both sides of the pelvis, in the lower back and rectal area, and   even down the legs. The amount of pain a woman feels correlates poorly with the extent or stage      (1 through 4) of endometriosis, with some women having little or no pain despite having extensive            endometriosis or endometriosis with scarring, while other women may have severe pain even           though they have only a few small areas of endometriosis. Throbbing, gnawing, and dragging pain             to the legs are reported more commonly by women with endometriosis.[4] Compared with women with superficial endometriosis, those with deep disease appear to be more likely to report shooting        rectal pain and a sense of their insides being pulled down.[citation needed] Individual pain areas and     pain intensity appears to be unrelated to the surgical diagnosis, and the area of pain unrelated to area of endometriosis.[citation needed]

Endometriosis lesions react to hormonal stimulation and may “bleed” at the time of menstruation. The blood accumulates locally, causes swelling, and triggers inflammatory responses with the activation of cytokines. This process may cause pain. Pain can also occur from adhesions (internal scar tissue) binding internal organs to each other, causing organ dislocation. Fallopian tubes, ovaries, the uterus, the bowels, and the bladder can be bound together in ways that are painful on a daily basis, not just during menstrual periods.[citation needed]

Also, endometriotic lesions can develop their own nerve supply, thereby creating a direct and two-way interaction between lesions and the central nervous system, potentially producing a variety of individual differences in pain that can, in some women, become independent of the disease itself.[2] http:

 2. What do you want others to know about what it’s like to live with chronic pain? (i.e.- what is it no one is saying about life with chronic pain? )

Vic has lost her spontaneity.  She has to plan every single outing well in advance whether it is a trip to the hairdresser or the doctor, watching Jon-Daniel play cricket or having a cup of coffee with a friend.  Vic has lost her ability to live.  She merely breathes.

3. Which philosophy do you ascribe to:  Keep hoping that the pain will get better or learn to adapt to life with chronic pain?

Both.

4. What do you miss the most that you feel you gave up because of chronic pain?  What do you do now to fill that void?

Playing with her boys…. Vic was never able to play ball or “touches” with the boys.  Vic spent a lot of time reading to the boys when they were younger.  Now her health and pain is at levels that prohibits any compensatory actions.

 5. What have you heard from others that made you feel better? 

“It is okay to give up….”

 6. Do you feel that people view/treat you differently? How?

People get tired of hanging around people who are always ill and in pain.  They avoid Vic.  The average person does not know how to handle her raw pain and they are scared that pain or “bad luck” is contagious.  Vicky is viewed as someone who is past her “sell by” date.

 7. What coping mechanisms have you tried that worked for you?  Which ones did not work for you? (Traditional and Non-traditional)

Vic used breathing techniques earlier in the diseases timeline.  Now it is too painful.  When Vic has a good day she will do something extravagant like pick the boys up from school and take them for a milkshake.  It allows her for a brief moment to believe that her life is normal.  It is a form of a coping mechanism.  Living the moment and pretending that her life is “normal”

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Happy birthday my angel child!


Vic and all the men in her life admiring her PC tablet

Friday morning the boys woke Vic with breakfast and coffee.  They sang “Happy Birthday” and gave her beautiful gold earrings that they had chosen and paid for themselves.

Vic went to breakfast with Leeann at 08:00 and set off for the Beauty Parlour with Esther at 10:00.  She was home with beautiful nails at 11:30. Poor little poppet!  She was so exhausted.  She got into bed and slept for the rest of the day.

We woke her at 18:00 to get ready for dinner.  She was in too much pain.  She sobbed.

The boys spoke to her and told her “We will have takeaways and have dinner in your room Mom…like we did on Mother’s Day.  It will be fun!” Vic had spare ribs and the boys and I had wonderful hamburgers!  Danie is so health conscious he had the fish!  It was a lovely evening.  We were sprawled all over her bed, laughing and joking. I sat there and my heart filled with joy.  My beautiful little girl, her sons and my wonderful husband once again celebrating her birthday.

When Danie and I gave her a Tablet Vic was over the moon.  She loves gadgets and has wanted a PC Tablet for a long time.  Vic said “Mommy I can’t believe I got a Tablet that I don’t have to drink!”  We laughed until our tummy’s hurt.

Vic and I

We had arranged a barbeque for Saturday afternoon to celebrate not only Vic’s birthday but also Tom (son-in-law married to Lani) who has a birthday on Tuesday – 4.9.2012, Henk (grandson – birthday 2.9.2012)and Francois (Tom and Lani’s friend – birthday Monday 3.9.2012).  We hoped that Vic would have recovered enough to be able to enjoy the afternoon.  She rested until 14:00 and got dressed just in time to meet the first guests. We planned to sit under the trees but the weather turned.  A cold wind blew and we moved the party to the house.

Lani’s magical tables!

Children were running around and laughing.  Lani had prepared party packs for the kids and they had a ball!  The table settings were beautiful.  Lani is a magician!  Clusters of people were standing around chatting and laughing.  For a short while our household would appear to the world as a perfectly happy and normal household.

Vic looked so beautiful.  To the untrained eye she looked just like a normal, healthy young woman.  That is until she moved…she shuffles like an old lady!  She insisted on having photos taken with everyone as they arrived!

By 19:00 Vic was exhausted!  She conceded defeat and changed into her pyjamas on and slippers.  She came back to the table and tried so hard to hang-in.  Poor little poppet!  She cried from pain

Vic had a very bad night.  “What else can I take for pain Mommy?” became a refrain!

Last night Jared developed kidney pains again.  He said it was the same as last weekend’s kidney stone pains but worse.  This morning we decided to take him to the casualty department (ER).  Vic very bravely got dressed.  It was however very clear that she would not be able to go with.  She was just in too much pain.  She was heartbroken and sobs racked her little body.  “I am letting my son down….”

Jared had lots of pain meds and tomorrow morning we will see his urologist.

Our household is back to normal.  The laughter has subsided…..

It was a happy birthday………

Henk Birthday Boy 2.9.2012
Francois 3.9.2012 with Lani and Tom  4.9.2012 in the background

Fun was had by all!