Category: Chronic Pain

Mommy, I thought I had more time….


Jared and his proud mommy

“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

The Hospice doctor that called to see and evaluate Vic was a tall, slim young woman.  She has a gentle voice and long fingers with short nails.  She drives a Jeep and keeps large dogs.  She looks like a naturalist.

“I am Dr Sue Walters from Hospice.  The Pain Clinic asked us to see you.  Is it okay for me to examine you?” she asked Vic in her gentle voice.

Vic’s abdomen was severely distended and very tender.  She was running a fever and her resting heart rate of 103 indicating severe pain despite the fact that she had already taken her pain medication.  Vicky’s vitals were poor.

Sue administered a strong morphine injection.

“Vicky, you appear to have an abscess on the right-hand side of your abdomen.  The skin is hot to the touch and distended.  I think you have a partial obstruction.” Dr Sue said to Vic.

“I am here to see if Hospice can help you.  Do you realize that you are very ill my love?”  Dr Sue asked Vic.

“Hospice will not hasten your death my love.  It would be our aim and purpose to provide you with pain relief and quality of life.  We will treat you and not the disease.  It is exclusively your decision whether you want us to help you and how you want us to help you.”  She explained to Vic

Hospice is a philosophy of care. The hospice philosophy or viewpoint accepts death as the final stage of life. The goal of hospice is to help patients live their last days as alert and pain-free as possible. Hospice care tries to manage symptoms so that a person’s last days may be spent with dignity and quality, surrounded by their loved ones. Hospice affirms life and neither hastens nor postpones death. Hospice care treats the person rather than the disease; it focuses on quality rather than length of life. Hospice care is family-centered — it includes the patient and the family in making decisions. http://www.cancer.org/Treatment/FindingandPayingforTreatment/ChoosingYourTreatmentTeam/HospiceCare/hospice-care-what-is-hospice-care

Vic was in so much pain that she was barely able to speak.  Tears welled up in her eyes and she softly said “Please doctor”.

“My love, you need to tell us how you want us to treat your symptoms such as obstructions?” Dr Sue asked

“I want no life extending treatment.  I am so tired doctor” Vic whispered.  “I can’t do this anymore…..”

“That’s fine my love.  We will try and relieve your pain and give you some quality of life.”

“Mommy I thought I had more time…” Vic said with tears silently running down her cheeks…… Then the injection kicked in and she drifted off to sleep.

Dr Sue said that the responsible sister would collect the morphine from the Hospice pharmacy and she would set up a  subcutaneous morphine syringe system by that afternoon.  Hospice would arrange for counseling for the boys.

She hugged me and left.  All of a sudden I felt so alone again!

Subcutaneous, or under-the-skin, injections use a needle to deliver medications into tissue just under the skin. An infusion of morphine, anti-nausea medication and Dormicum is now administered 24/7.

The first couple of days Vic slept a lot.  She was tired but there was immediate pain relief.

The nausea subsided and the partial obstruction cleared two days later!

The first infusion site was in her leg.  Within a day and a half the area “tissued”.   A common side effect associated with subcutaneous injections is injection-site reaction such as swelling, redness, and pain.  We phoned Hospice and the Nurse promptly came and the needle was reinserted into the arm.  Within two hours the needle came out again and the morphine was running onto the skin.  It was too late for the Hospice Nurse to return and to re-insert the needle so Vic went to the doctor and he relocated the needle into the abdominal area.

Last night the tissue in the abdominal area had tissued again.  It was also bloody and the morphine was running onto the skin and not into the tissue.  Vic was nauseous with pain.  I had no option but to remove the needle and re-inserting it into a different site.

“I think we should put it into the other side of your tummy” I said

“Mommy, I will insert the needle if you help me…” Vic replied

“No sweetie” I said.  “I will do it”

My heart was in my throat.  I removed the needle and cleaned the injection site.  I disinfected the new site that I had identified.  I took the needle in my hand and lifted the skin.  I pushed the needle against the skin.  I assumed that the needle would just slide in… It did not just slide in!  There was resistance!! I let go of the skin and changed my position.  I could hear and feel my heart pounding in my ears! I again took my child’s skin between my fingers and pulled it upward.

“Maybe I should relax my hold onto the skin…maybe the skin must more relaxed?…..” I thought.

I exerted pressure on the needle and it slid in…  Sweet success!!!!

“Oh Mommy you are such a star!  Thank you.  That did not hurt at all!” Vic gushed.

I do not believe her.  I had felt her little body tense up as the needle went in.  It hurt!

My entire body shook.  The bile rose in my throat and I slowly let out my breath.

We have all come such a far way.  Until last night I could not watch anyone stick a needle into my child.  Now I have stuck a needle into my child’s flesh.  I fear that Vicky’s tissue is too poor for us to continue on the subcutaneous route…… If we do I will have to do this many more times in my life.

The good news is that I was actually able to work the whole week.  It was the annual African Air and Defense Show and we exhibited.  Normally I would be absolutely frantic about Vic.  But I was okay with the fact that she is relatively pain free and the nursing sister visits every two days.

Vic is far more active.  She is truly so much better.  The partial obstruction appears to have cleared!  She spends time chatting to the boys.  On Saturday she took Jared shopping for a new shirt and shoes!

On Sunday morning Jared lit candles “For those we have loved and lost but will forever be in our memories♥..Gramps, Oupa Tienie, Ouma, Nan and Oupes♡”  Vic handed him his baptism candle that she received 15.5 years ago at his christening.  He lit his candle as he took responsibility for his own walk with God.  Vic and I laid hands on him and prayed for him.  It was so touching.

Joyous day!

Vic attended Jared’s confirmation service.  I have never seen a more radiant and proud mother in my entire life.

Vic has reached another milestone in her life.

Pain keeps you alive!


She explained to us that Vic’s pain is what is keeping her alive.  ”An adrenaline rush is the fight or flight response of the adrenal gland, in which it releases adrenaline (epinephrine). When releasing adrenaline, one’s body releases dopamine which can act as a natural pain killer. An adrenaline rush causes the muscles to perform respiration at an increased rate improving strength. It also works with the nervous system to interpret impulses that trigger selective glands.”  http://en.wikipedia.org/wiki/Adrenaline_Rush

via Pain keeps you alive!.

Pain keeps you alive!


Vic has been accepted into the Hospice program.  The doctor evaluated her at 07h00 this morning and immediately gave her a strong pain-injection.  She also put on a 75mg Durogesic patch.  Vic will remain at home.  We now have access to nursing professionals 24/7.  A subcutaneous infusion will be set up this afternoon for the administration of all further pain medication .  Vic will no longer drink any tablets.

Vic has a partial obstruction and an abscess in the abdomen.

The continuous subcutaneous infusion of drugs by a small portable pump (sometimes called a “syringe driver”) is a major advance in terminal care, particularly for symptom control in the home. It has a number of advantages over intravenous therapy. It is safer (much less risk of infection and no risk of air embolus). The patient can remain fully ambulant. Tolerance does not develop to subcutaneous morphine as it does occasionally to IV morphine. (see Morphine)

The main indications for continuous subcutaneous infusions are vomiting, dysphagia, severe weakness or unconsciousness. They can be particularly useful for patients at home, either to control nausea and vomiting, or during the last days of life if the patient is no longer managing oral medication.

A continuous subcutaneous infusion of drugs is particularly useful in the management of malignant intestinal obstruction. (see Intestinal Obstruction)       http://www.hospiceworld.org/book/subcutaneous-infusions.htm

In the words of Dr Sue Walter, MBBCH/PALLIATIVE MEDICINE, “Vic’s suffering is inhumane”.

She explained to us that Vic’s pain is what is keeping her alive.  “An adrenaline rush is the fight or flight response of the adrenal gland, in which it releases adrenaline (epinephrine). When releasing adrenaline, one’s body releases dopamine which can act as a natural pain killer. An adrenaline rush causes the muscles to perform respiration at an increased rate improving strength. It also works with the nervous system to interpret impulses that trigger selective glands.”  http://en.wikipedia.org/wiki/Adrenaline_Rush

Maybe this is the final part of Vic’s journey.  I do however expect her to bounce back!

Syringe driver

 

 

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

Pain Clinic 11.9


Urghhh!  Yesterday was a horrible day!

Vic was fine but it was Pain Clinic day…………. I start stressing about the Pain Clinic the day before.  Although it is on an appointment only basis, it is also first come first serve……

With the amount of morphine Vic takes, she needs to be assessed on a monthly basis by a pain specialist.  Vic was not able to go with yesterday morning so I set off on my own.  By now the Pain Team knows me well.  Even when Vic goes I am actually able to give them more succinct feedback on Vic’s pain control than she is.

Generally I do not have a problem in getting her script even when I am on my own.  I walked in just before 8am and the waiting area was packed!  My heart dropped into my shoes.  It was going to be a longggggg day…..

Surprise, surprise – no Prof Froehlich!  Just a young anesthetist I do not know.  It was going to be an even longer and more stressful day than I imagined when I walked in.

Well, what a pleasant surprise when the Sister in Charge called out a number of patients and handed them their repeat scripts.  That was a first!!!  All of a sudden the queue was much shorter!  There was hope….

I was the second “patient” to be consulted.  Yeah!!!

The Pain Clinic works on a two file system.  The Pink file contains the Team’s observations and notes on previous consults, medical history, medical letters, test results etc.  The patient keeps the brown file.  It contains the prescriptions.

http://www.mardel.com/hot-pink-file-folders.aspx

The new doctor introduced himself and apologized for the professor not being there.  He started paging through the pink file.  He frowned.  He read.  He paged back.  He frowned more.  He shook his head in disbelief and clicked his tongue.  I sat there and I thought: “Flippen hell!! He is not going to give me the morphine script and we have no reserve stock.  He will want to consult with the Professor first or insist on seeing Vic…We will have to come back.”

Maybe I can ask Danie to help her get dressed and bring her to the Clinic…But she was in so much pain when I left and had vomited violently the previous night from pain.

“Who takes care of Mrs Bruce?” he asked

“I do”

“Do you have help and who is looking after her now?” he asked

“My husband is amazing.  He helps and her boys help.  I also have a domestic who assists.”

“Are you able to work taking care of Mrs Bruce?” he asked

“I am fortunate.  I am able to work from home.”  I said

“How are her sons handling her situation?” he asked

To my shame I started tearing up.  The Sister got up and handed me a tissue.

“It is very hard for them.  I sometimes see the helpless despair in their eyes when they look at her.  Her eldest has been in hospital twice in a matter of two weeks for kidney stones and Vic not able to go with him to the hospital.  She was too ill… And now the doctors suspect he may have Lymphoma.  He is only 15…”

“How is she handling it?”  he asked

“Vic is absolutely devastated.  She feels so guilty that she is unable to be a “proper” Mom to the boys… She is worried sick!” I said in a weepy voice.

“Are you having any professional counseling?” he asked

“No I replied.  We use all our financial resources to pay doctors, hospitals and pharmacies.  Counseling cannot and will not keep Vic alive.” I replied.

He started writing the prescription.

“Is she coping with the pain medication?” he asked

“The Jurnista is amazing.  It has made a phenomenal difference in her pain management.” I said

“The hospital will not supply you with the Jurnista.” he said

“I know.  May I have a private script for it please? I asked

“There is no morphine syrup in stock doctor.  Please put the syrup on Mrs Bruce’s private script.” the Sister in Charge said.

He handed me the brown file and an envelope.

“I have written a referral to the Hospital’s Psychology  Department.  You need to see someone as a family to help you through this.” he said.  “There are other palliative care options other than Hospice.  I see in Mrs Bruce’s file the Prof is working on it…” he concluded

I did not dignify his remark with an answer.  We shook hands.  He wished us well and I left to spend another couple of hours waiting for the medication to be dispensed.  I fell asleep in my stainless steel chair outside the pharmacy and my neighbor had to wake me when it was my turn.

Today I went to meet Lani’s foster son.  I am going to gloss over my visit with baby Izak.  He is so cute that I need to dedicate an entire post to him.

On my way home I had a phone call.

“My name is Christa.  I have been asked by Prof Froehlich to assess Mrs Bruce for palliative care assistance.  Would 9am tomorrow suit you?”

“Absolutely.” I said.  “Do you need directions?”

“No, I have a GPS” she said….

It is going to be a longggggg night!!!

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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“We never cry in front of the children …..”


Jared and Vic after the “news” today

Babies are emotional beings right from birth. As parents we know that babies respond to emotional expressions such as smiling within the first few weeks of life. Within three months babies can react to and express joy, interest, anger, sadness and disgust.

Babies and young children express their emotions without reservation.  In time, they however learn to control and even conceal some of their feelings, especially when they are sad, frightened, or angry.

As adults we lose our ability to communicate spontaneously.  We become guarded.  Many of us may still be comfortable expressing positive emotions, such as joy, pride and happiness, but will refrain from sharing feelings that we fear may make others uncomfortable.

The grieving process that walks hand in hand with terminal illness however catapults the bravest of us into a whirlpool of emotions ranging from fear, sadness and anger to irrational hope.

We are what we are.  If you are naturally an introvert it will be very difficult to reach out to others when we or a loved one battles a serious or terminal illness. This makes the grieving process difficult for us.  People who are comfortable in expressing their emotions are usually more able to reach out to others for the support and reassurance that they need.

When I am scared or angry I withdraw within my safe place where no one is welcome or allowed. In fear I will push people away from me.  Anger is different – I will lash out and go for the jugular.  Fear for my family will bring out the most primal instincts in me.  I will do anything to protect them.

To maintain control I hold tightly onto my emotions– I know that if I allow myself to falter even a little, I may collapse into a whimpering heap of tears.  It has taken superhuman efforts to allow Vic to see some of my pain.  Well, I fool myself that she only sees some of it.  Vic knows so well how my life will screech to an end the day her life ends… We have spoken about absolutely anything and everything.  She knows my heart.

Tomorrow morning Jared will have a lymphoma biopsy.

Today, when I saw the tears of fear form in Vic’s eyes, I said “Stop!  We never cry in front of the children”

Tomorrow I will smile, support and encourage.

Tonight I will weep for my beautiful grandson, his mother and his little brother……..I will weep for his grandfather and everyone who loves and admires him.

When I wipe my last tears I will retreat to my safe place…..  Tomorrow I will smile, support and encourage.

Whispered secrets



Jared and Jon-Daniel taking Vic for a walk during one of her hospital visits 28.8.2011

 

Whispered secrets


Jared and Jon-Daniel taking Vic for a walk during one of her hospital visits 28.8.2011

It is Monday the 3rd of September 2012.  Vic had a horrible night and looked absolutely terrible this morning.  Jared’s kidney hurt like hell and I got an appointment for him to see the urologist at 13:00.

Vic wanted to go with but Jared held her little body in his arms and said: “Mommy please stay in bed.  Oumie will take me to the doctor.  I promise I will phone you if I am scared or need you.” 

Vic sobbed uncontrollably.

“Please Mommy, you are just going to be more sore and sick if you go with now…”

Jared and Jon-Daniel are strong and terribly protective of their Mommy.  It stresses and scares them when Vic tries to do too much.  The boys are continually stressing that Vic, in her endeavors to mother, overdoes things and then pays the price.  They feel guilty…they assume responsibility for Vicky’s actions.

“Mom picked me up from school and is now very tired….”

” Mom came to watch me play cricket and is now sick in bed for a week again…”

” Mom broke another vertebra taking me to school….  “

Whilst friends and family “ooh and aahh” about how mature and responsible the boys are, their lives are lonely lives.  They are missing out on their own childhood experiences.  Most of the children in Jared’s class are having “Sweet Sixteen” parties.  Jared is invited but chooses to stay home.  He says it is because the kids smoke and drink…  But I know he does not want to leave his mother.

Until earlier this year, when Vic spoke to the boys, there were whispered secrets, secret tears when we thought they were not looking and false bravado when they were looking.  You see, although we know death is inevitable, the timing is uncertain.  It is like running a marathon without knowing any details about the timing or the course. The boys also experience guilt because they too pray that Vic’s suffering will end.

Yet Vic struggles with dying.  It is impossibly painful to leave her sons.  To let go….. To allow them to be grandmothered….

So, today I again, experienced the unbelievable selflessness of a parentified child when Jared said “Please Mommy, you are just going to be more sore and sick if you go with now…”  https://tersiaburger.com/2012/06/30/a-mothers-love-for-her-sons/

Tomorrow morning Jared will return to the operating theater for the 3rd time since the 27th of June 2012.  The sonars show at least two more kidney stones.  Obviously last week’s lithotripsy, or shock wave therapy (EWSL), (to break the stone up into smaller fragments to allow those small pieces to pass more easily into the bladder), was not the solution.  The urologist will perform ureteroscopy.  Instruments are threaded into the ureter that will allow the urologist to place a stent (a thin hollow tube) through the urethra, past the bladder, and into the ureter to bypass the obstructing stone. This stent will be left for two weeks when  Jared will once again go back to theater and the urologist will use instruments to “grab the stone” and remove it.

Tomorrow morning Jon-Daniel will go to school – fearful for both his mother and brother.  He will bravely write a maths test and excel at it.  Success and high marks are his coping mechanism.

How unfair is life.

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!