Tag: pain

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/

Lovely Blog Award


Lovely Blog Award

I was recently nominated for the lovely blog award and graciously accept. Thank you Tracy Rydzy for this nomination.  http://ohwhatapain.wordpress.com.

Tracy has opened my eyes to the world of the chronic pain sufferer.  Vic hides things from me because she tries to protect me.  I am so healthy and do not know or understand pain.  Tracy articulates pain and her journey beautifully and I am grateful to her for sharing her painful journey with the world.  It is such a valuable source of information!  It has given me an insight into the dark, fearsome world of pain.  Thank you Tracy and all the people who I nominated.  You and bloggers like Katie Mitchell – http://connectivetissuedisorders.wordpress.com, (who nominated Tracy), have made my world a better place.  I thank you all.

The Rules for The Lovely Blog Award:

– Thank the person who nominated you and link to them in your post.
– Share seven unknown things about yourself.
– Nominate other bloggers and blogs that you like or admire.
– Contact the bloggers you nominate to let them know and to link them back to your post.

1. I cry in the shower
2. I only learnt to cook after I got married – the 2nd time!
3. My ultimate career would be to be a spy.
4. I want to be the oldest person to ever skydive
5. I read the eulogy section in the newspapers
6. I feel guilty because I am so healthy.
7. I am a loner.

I have nominated the following bloggers because I enjoy their blogs very much and have found their information and comments helpful:

http://grammarofgrief.wordpress.com

http://thedrsays.org

http://ourlonggoodbye.wordpress.com

http://missmorgansmom.wordpress.com

http://dlmchale.com

http://poemattic.wordpress.com

http://fullcircledme.wordpress.com

I hope that you will take time out of your schedule to check out some of these beautiful bloggers.  It is truly inspiring.

This is Vic’s Journey


I sense a loneliness of the heart in Vic.  I cannot imagine what it feels like to be aware of the fact that you are facing your last months of life, planning your funeral….No matter what we do or say – this is Vic’s journey.

via This is Vic’s Journey.

This is Vic’s Journey


Despite the fact that Vic has known for a long time that she will not die from old age the grim reality of Hospice involvement has forced Vic to come to terms with many losses.

 “I still can’t believe it’s going to happen. I thought I had more time. I’m tired but I don’t feel that bad. I just feel like such a burden! I am so worried about how you will cope Mommy.  We have always been so close….” Vic lamented this past week.

I am told that Vic is expressing many normal emotions that occur near the end of life. She is feeling the shock of how final death is and the guilt of being a burden on the family. Vic is also concerned about her family she will leave behind….

Knowing that death is imminent is takings its emotional toll on all of us

Vic said tonight that she has never been more scared in her entire life.  She is scared of being “isolated” from us.  She fears that we will not cope.  She is so scared of the pain.  She is so scared of leaving the boys behind….

I blogged on Vic’s fears before.  https://tersiaburger.com/2012/07/01/vics-fears-2-7-2012   That blog was based on some research and actual observations.  Now the fears have intensified and are more real than ever. The situation has changed so much in the past three months.   For the worse!

The good thing is that Vic is actually sharing her fears with me.  Tonight we prayed over her fears.  Vic, at last, is dealing with her fears.

Vic is not ready to die. I am certain that very few people actually ever feel ready to die. I have read that it is perfectly normal to feel angry about life being cut short — it’s unfair and you have a right to be mad!  Unfortunately, anger often gets directed at those closest to us, the ones we love the most. We feel safe with these people and know they will probably accept our anger and forgive us for it.  Vic over the past couple of months has lashed out at the boys and I.

Vic is now channelling her anger as a source of energy to help her take action where it’s needed. She is telling us, her family, things she really wants us to know. Vic has re-channelled her anger to do meaningful and positive things.

Vic feels guilty about being a burden on us.  She also feels guilty that she will be leaving her children behind.  Tonight she told me that she felt guilty for distracting me whilst I was driving, 32 years ago, and we were involved in an accident!  I told her that I felt guilty for yelling at her when she was 4 years old.  Until my dying day I will always remember the fear and confusion in her dark brown eyes….

Worrying endlessly about these long-gone things won’t make it feel better about them. It won’t ease the burden we are carrying. It won’t make us feel better. It won’t make Vic live longer…

We spoke and I told Vic that we simply have to let things go.  We cannot change the past.  We must fix what can be fixed and try to let go of the things that cannot be changed.

Vic is stressed that Jon-Daniel and she have drifted apart.  He is angry with the situation.  She wants to spend time with him to rebuild their relationship.

Vic is no longer looking ahead to a seemingly “endless” future. She has lost so many things already.  The strength to get around like she used to, the ability to get together with friends….. Vic feels distanced from friends who cannot handle the fact that she is going to die soon.

Vic has had many physical and emotional losses which have come before the loss of life itself.  Yet she has gained some things too.  She is seeking spiritual peace, a new relationship with her God.

Hospice has given Vic Azor for the anxiety.  I believe that the drug is allowing Vic the calmness to seek spiritual peace and closure.  She is getting her life in order.  Over the years we discussed death as a natural extension of life….  Now she is discussing her funeral with me.  Psalm 23 ans 1 Cor 13 will be the readings…  What I will dress her in… Her pallbearers…

I sense a loneliness of the heart in Vic.  I cannot imagine what it feels like to be aware of the fact that you are facing your last months of life, planning your funeral….No matter what we do or say – this is Vic’s journey.

I remember how I cried when I watched the movie Passion of Christ and saw Mary having to stand by, helplessly,  whilst her son suffered carrying The Cross…  She had to stand by and watch Him die the cruelest of cruel deaths…

Tonight Vic prayed “Dear Lord Jesus, we have not been friends for a long time.  Yet I have come to you tonight to ask You to put Your arms around my children and to protect them…”

God please have mercy on my child.

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

 

 

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!!!

Never Alone


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Yesterday I was really angry with Vic and the unfairness of life!!  I know it was because Jared was hurting and I was scared.  I watched nurses put needles and IV’s into my beautiful grandson.  I saw him being wheeled into theater for the second time this year.  I remembered how ill he was as a baby and a toddler.  I felt the same fear strike at my heart as 13 years ago…

I wish I could protect my child and her sons from the pain, fear and uncertainty that they live with every day of their lives.  I wish I could hold them close and ward off all hardship, pain and fear.  I cannot.  I can only promise that I will never desert them.  I will continue looking for brave doctors and cures….

So tonight I dedicate this song sung by Lady Antebellum to Vic, Jared and Jon-Daniel http://www.youtube.com/watch?v=lnNK4Alwbsw

I love you my beautiful Vic.  Your boys are my life.

Kidney stones on the move….


Another Hospital Passage – Different Day

On the 23rd of July, we found out that Jared had kidney stones.  (https://tersiaburger.com/2012/07/23/deje-vu-7/).  At the time the kidney stones were  not obstructing the urinary track so the decision was made, by the Urologist, to leave it and reassess the situation in 6 months.   On Friday night, at a Youth Meeting, Jared’s kidney stones gave notice that they had started to move!

I was petrified that if we took him to Casualty we would end up with a bum Urologist (https://tersiaburger.com/2012/07/27/vic-olympic-champion) so after researching “Kidney Stones” on Google we (I) decided to monitor and control his pain, let him drink lots of water, anti-inflammatory tablets and a urinary track antacid…  In the event of him “vomiting from pain” or “passing blood” we would be forced to be at the mercy of the On Call Urologist!

By Sunday night the poor soul was quite pale and said his pain was at an “8”.  There was no sign of bleeding and an insignificant level of protein in his urine (I kept testing his urine) and the Leucocytes, Nitrate, Urobilinogen, pH, Blood, Specific Gravity, Ketone, Bilirubin and Glucose levels were all within the correct limits….

I managed to get an appointment with the Urologist for 10:00 this morning.  He did a scan and low and behold there was this large (6.6mm) kidney stone stuck in the  urethra…. At 15:00 this afternoon Jared was wheeled into the operating theater for the 2nd time this year.  Thirty minutes later the urologist came through and told us that Jared had passed 5 of the original 6 kidney stones – including the one that showed up as causing an obstruction at 10:00 this morning!  The child did not whimper or moan!  He was stoic in his pain!  The 6th kidney stone was dissolved with a  procedure called lithotripsy. In this procedure, shock waves are used to break up a large stone into smaller pieces that can then pass through the urinary system.

In the passage of the hospital Vic said to me “Mommy, I am so grateful.  Jared got through the operation like a real trooper.  ”  I was immediately filled with an all-consuming anger.  The operation went well, Jared did get through it like a trooper but what has started happening in his young body?  Adhesions people!!  Flippen adhesions!!!!

I said nothing but she saw my face.

As soon as we had Jared settled and comfortable I brought Vic home.  She was totally exhausted and in absolute agony!

In the car Vic said to me “Mommy, you seem so angry with me?  What have I done?”

“I am angry that an innocent child is going through the same hell that you went through as a child”

Vic’s father and I were not aware of the Osteogenesis Imperfecta gene on her Dad’s side of the family.  We made the decision not to have more children after Vic was diagnosed.  We were determined to never subject another child to OI.

From a young age, we told Vic that OI was a genetic disorder.  She KNEW that she should not have children.  She fell pregnant TWICE.  I know she was on  the Pill, suffered from SEVERE endometriosis and that she fell pregnant against all odds.  Yet, she chose to carry the babies and risk them being born with the OI gene…. Despite the Dept of Genealogy at Wits University, her gynecologist and doctors strongly advising against it!

I love the boys with every fiber in my body!  I am so grateful that they are in my life.  They have enriched my life in every way.  I cannot imagine my life without them.  I don’t want to live without them.    But, almost every day of my life I counsel at least one of the boys that, only if the OI gene can be isolated, should they consider having children one day…  They see their mother’s suffering.  They live her suffering!  Jared is starting to live his own suffering.

We are seeing Jared regress into Osteogenesis.  It has been obvious for a long time that Jared’s ligaments and tissue are affected.  He has only had a couple of mild fractures but he is always hurting somewhere.

Today Vic said that I have become “hard”.  I suppose I have.   Vic thinks I am hard because I believe in death with dignity.  Because I stopped all aggressive treatment for Alzheimers Pneumonia after my Dad no longer had any control over his body functions and had forgotten how to swallow or walk!  Vic cannot believe that I want to talk to the boys about considering vasectomies when they become sexually active (or earlier).

I cannot do this again.  I am venting.  I am so angry!!  I am angry with a debilitating disease and yes, I am angry with Vicky for allowing this dreadful gene to be passed on to an innocent child.

This vicious cycle has to stop!

God’s Megaphone…….


C.S. Lewis says “Pain insists upon being attended to. God whispers to us in our pleasures, speaks in our consciences, but shouts in our pains. It is his megaphone to rouse a deaf world.”

For 37 years I have bargained with God.  He alone knows of all my anguish, tears, pleading, my fears and pain.  I am strong.  I don’t cry easily or often.   I have cried before God.  Pleaded with Him for mercy.

He chose to ignore my pleas for mercy.

I have not been to Church in more than two years.  I attended Marlene and then my Dad’s funeral.  I went to one service at Reuben church.  I have been angry with God….. Disappointed that the God of Mercy I learnt about from my parents’ knees does not exist.  I have only experienced a God who has sentenced my child, and now my grandson, to a life of pain and suffering.

Today I attended the annual church fete.  The arms that I have missed for more than 2 years enveloped me.  Kisses rained on my cheeks.  “I have missed you”, “We still pray for you and Vicky everyday of our lives”….. “It is so good to see you!”

The minister, Martin, hugged me and said “I think of you every day.  We are always here for you….

I cried.  I miss my church friends but I cannot go back for the wrong reasons.

I wondered tonight why the friendships did not last outside the confines of the church?  I realized that our pain is too much for people to cope with.  They hurt for me…..

But in the  silence in our everyday lives is deafening…God’s megaphone has obviously not roused the deaf in our world…….

I wish I could tell you….


I wish I could tell you…..

I wish I could tell you….


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I wish I could tell you,
About the depth of my pain,
It’s almost never-ending,
And hard to explain.

I wish I could tell you,
How broken I feel inside,
My body just hurts so much,
But it’s easy to hide.

I wish I could tell you,
I can’t function very well,
Difficult to get around,
But no one can tell.

I wish I could tell you,
But you wouldn’t understand,
That I often have to ask,
For a helping hand.

I wish I could tell you,
How I honestly feel,
But you wouldn’t believe me,
That this pain is so real…
http://janspoetryplace.webs.com/poemsofpain.htm

Today was a bad day


Vic and her boys Christmas 2011
Christmas 2011

When you have a frozen abdomen from having 80+ abdominal surgeries, have a septic abdomen and septic prosthesis in your spine, suffer from Addison’s Disease and spend 24/7 in pain your world becomes very small. You also become well travelled as you have been to hell and back! Life gravitates around pain medication, more pain medication and hopefully some blissful sleep. Friends come and go. Spouses come and go. In an uncertain life it is a certainty that everybody eventually leaves.

So for the few of us that choose to stay around it is important to be sensitive to the emotions of the terminally ill person. Allow me to personalize this… It is important for us as a family to be sensitive to Vic’s feelings of abandonment.

Countless times a day Vic will say “Thank you Mommy for…….” “Thank you for looking after me”; “thank you for not leaving me”; “thank you for loving me” …… A child should never ever have to say that!

An adult child should rebel against the constraints of her parents rules and discipline and leave home. She leaves the safety of the home and comes back for Sunday lunches, to drop off laundry and bring a new love around to meet The Parents… Eventually the child will venture down the aisle, fall pregnant, christen her children, start running a car pool…. the list carries on and on. Eventually in large parts of the world the aged parents may move in with the now mature children and eventually die. I got married, left home, had Vic, got divorced, bought a new house, started my own business, remarried and eventually my Dad came to live with us for 18 months until he forgot how to breathe. Not once in my adult life did I ever consider moving back home to my parents. As an adult, wife and mother I often longed for the safety of my childhood home. I long for just ONE day in my life without responsibilities. I long to be a child again – carefree and cherished…. I miss my mom and wish I had her support and advice to get us through this difficult journey.

My sister and I discussed the way our lives had turned out. She has had an extremely challenging life and I seem to go from one crisis to another. We decided that we used up all our good luck and happiness as children…. I want to be a child again!

As usual I digress.

Vic is emotionally fragile. She fears that the remaining few people will also get tired of her ill health and pained life and abandon her.  She fears that the boys will abandon her and look to us, the grandparents, for parenting.  She fears losing the only “position” in life that she has left – the position  of “Mother”.  It has been very difficult to sacrifice her independence and move home. She has gone from being a wife to being a child. She has gone from being the mother to being mothered. I am a typical parent. I want to protect my little baby…. I want to do everything for her. I want to wrap her up in cotton wool and keep her resting in her bed. Maybe if she takes things easy it will buy us some extra time… If she is in bed her chances of injury is less.

Every day of her life countless indignities are heaped upon her. She is dependant for everything from medication, care, food and money. Poor poppet! Death is always in the foreground of her mind. Either fear of dying and at times fear of not dying.

I don’t really know what I set out to articulate in this blog but writing has once again reminded me what a pitiful life Vic has. My poor, poor little baby! No-one in the world deserves her life! But we will never abandon her – ever!

Today was a bad day – again.

Cannabis and Pain Control 14.8.2012


http://citydesk.freedomblogging.com/files/2011/04/bud.jpg

Today was a terrible day.  The pain Clinic was crazy!  I have never seen so many people waiting to see the Professor.

When you are sitting in a queue for hours with people you meet every 28 days, you get to know the fellow patients.  But today there were two new faces.  An attractive young woman and her tired looking mother.  They appeared to not be very cultured or refined people.  The young woman was the sister of a patient who, like Vic, is too ill to come to the Pain Clinic.  His sister (S) and mother (M) are his proxy’s.

S became very agitated because she was told – “no appointment,  no consultation, no prescription”.  She actually used some choice language!  She kept saying “It is not for me.  I actually don’t care….”

She however bullied the nurse into agreeing to allow the unscheduled appointment.  But it was a long wait and S, I suspect, is a little ADD.  She was babbling about her brother and his pain and the sacrifices that the family had made after the brother’s motorbike accident.  At one stage of the monologue she said “Sometimes I just think I must give him some poison….”

Holy Moses!! It flashed through my mind “What type of person is this?”….

I was intrigued by the personality so I started chatting to her.  All it took was one or two questions and a flood of emotions and words poured out of them.  Sitting there I realized that I blog and that is what she was doing… S was blogging…..verbally.

She started telling their sad story.  Brother had been involved in a motorbike accident and spent weeks in ICU, ventilated and suffering some brain damage, severe nerve damage and lots of fractures.  He spent many months in hospital and gangrene developed in his leg.  His leg was amputated but the gangrene spread and this lead to 3 further amputations!  The mother said if she had known how he was going to suffer she would have prayed for him to die.

A small percentage of amputees suffer from phantom pain.  “Although the limb is no longer there, the nerve endings at the site of the amputation continue to send pain signals to the brain that make the brain think the limb is still there. Sometimes, the brain memory of pain is retained and is interpreted as pain regardless of signals from injured nerves.” http://www.webmd.com/pain-management/guide/phantom-limb-pain.  Brother apparently squarely falls into this category.

Sister loudly proclaimed, for the world to hear, that she sometimes considers giving her brother  enough morphine to end his misery.  She believes that he is hanging onto life until his insurance claim pays out so he has something to leave his children…

The mother is taking care of her son.  It is obvious that her life has come to an end.  I see the despair in her eyes when she says “He doesn’t sleep.  Yesterday he threw his crutch at me…..”

Sister then whispers, in a conspiratorial manner, “We buy him lots of extra medication”

I asked them whether they had ever considered giving him cannabis.  “Oh yes” they said.  “We made him tea and he hated it!”

“It is better if he smokes it” I said

I looked around and saw shock and surprise register on everyone’s faces.  I could see them think “How can this (sweet) middle aged, conservative, Afrikaans speaking lady even know about cannabis?”

Well, I do know about cannabis.  I have researched every single aspect and possible pain management method and product and my research includes the effect of cannabis on pain relief.

  • Marijuana helped reduce pain in people suffering spinal cord injury and other conditions. In this study, 38 patients smoked either high-dose or low-dose marijuana; 32 finished all three sessions. Both doses reduced neuropathic pain from different causes. Results appear in the Journal of Pain.
  • Medium doses of marijuana can reduce pain perception, another study found. Fifteen healthy volunteers smoked a low, medium, or high dose of marijuana to see if it could counteract the pain produced by an injection of capsaicin, the ”hot” ingredient in chili peppers. The higher the dose, the greater the pain relief. The study was published in Anesthesiology. http://www.webmd.com/pain-management/news/20100218/medical-marijuana-has-merit-research-shows

A couple of years ago I bought some cannabis and put it in brownies for Vic to eat.  She hated it.  I gave her some to smoke.  She hated the effect that it had on her.  I know it is illegal.  Personally I have never smoked or eaten the stuff so I do not know what effect it has on people.  I have read, in 100’s of publications that it reduces the pain perception and can stop the devastation of Alzheimer’s.

I will stop at absolutely nothing to relieve my childs pain.

I then had a light-bulb moment – I realized that the mother and daughter were no different to me.  They know the heart wrenching despair of caring for a loved one who has indescribable pain.  They too pray for their loved one to find peace and release in death.  They will also do anything to relieve the pain of their loved one.

I just have an extra layer of veneer

Mommy I broke my Back!!


Vic as a young Mommy!

Vic has had an absolutely amazing week.  Her pain has been beautifully controlled.  We have had severe bouts of vomiting and cramping but compared to a month ago – it was a walk in the park!

The Jurnista is definitely working!  I have an appointment with Prof Froehlich on Tuesday, the 14th of August, and she will then give me feedback on Hospice.  I was completely prepared to tell her I don’t need Hospice on any level anymore.  Vic’s pain is so well under control that I can handle her care with no assistance or problems at all.

My baby sister (she is only 55 years old) Lorraine, spent some time with us over the long weekend in-between umpiring at the South African National Netball Tournament.  She was amazed at how well Vic looked.  (Remember she last saw Vic when she fell at the end of June).  Vic has been amazing.  This week she has been far more mobile.  She started thinking (arguing) about driving again…..  The first time in months!

This morning Vic went to breakfast with her friend Angela.  She was so excited.

Two hours later Vic literally shuffled into the house.  “Mommy I broke my back!”

My heart stopped.

On a certain level I am angry.  I am angry that Vic wasn’t more careful.  I am angry that I slipped into a false sense of security!  I am angry that the Jurnista is masking the pain so well that Vic is pushing her body’s boundaries.

Conclusion:  Vic is still a very sick little girl.  The fact that her pain is better controlled does not mean that she is well.  If any of us had spent the amount of time vomiting and cramping that she has this week we would be in bed hooked up to an IV and praying for death.  This week Vic’s amazing resilience again amazed me.  She is strong beyond comprehension!

My heart bleeds for her that her fragile body has once again failed her incredible will to live.  It is clear that she is merely holding onto life, as she knows it, with her fingertips……

I will go to the meeting with Prof Froehlich and continue my fight for Hospice to become involved.  Vic will never function on any level again.  She is confined to bed relying on medication to keep her sane.  Maybe she will have a good couple of days here or there but her sentence has not been commuted.