We need a miracle again….


 

 

 

 

I posted this a year ago.  We never did get the miracle we needed.Image (195)

Vic's Final Journey

Daniel and Vic 29-01-07

Sr Siza examined Vic today.  She phoned Dr Sue who will be in tomorrow morning.  She also brought a script with for Dalacin antibiotics.  The cellulitis has spread to all three the subcutaneous sites.

Siza expressed her concern at Vic’s decline…

Last Friday Danie, my husband, came and sat next to me and said “I know everyone says it will be better for Vic to die than live in this pain but I was thinking how hard it will be for us without her…”

That statement really shook me.  Up until now death has been a hypothetical issue… Doctors diagnoses and prognosis…predictions…  I have never really considered living without my child.

Last week Siza and I met with the CEO of Amcare, a large community project that provide community based feeding schemes, HIV/AIDS Counselling, Home-based care, skills development, ARV Clinic, women and children shelters.   We are hoping that they…

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A Poem About a Mother’s Love for Her Very Sick Child


I posted this when Vic’s death was a future event.  I did not realise how dreadful the loss would be.  How devastating the longing for my child.  How severe the physical heartache would be… Today I would give everything I own just to hug and hold Vic one more time.

  Image

I know that I would do all things for you.
My spirit would always take care of you.
And when I die and leave this world behind.
You can be rest assured that my love will stay behind.

Even though sometimes we’re far apart.
You have always remained right here in my heart.
I will forever whisper in the wind
Unconditional love that’ll forever stay within.

If only I could go wherever you go
So I could do things I need to do for you.
Since I can’t, the best sacrifice I can give
is keep you in my heart and allow you to leave.

I’m lifting up the burden in your heart
‘Cause I know that you don’t know where to start.
I’m transferring all the pain inside of you
Into my care, into my heart, and now it’s through.

I love you so much and I know that I can bear
This greatest pain to let you go, I swear.
Know in your heart that my love will forever stay
Even though I would seem so far-away.

I’ll be your strength that’s why I’m relieving you
Of all the pain and tears inside of you.
No need to worry for all your pain will be gone.
It will be with me now, and I shall carry on.

You may think I’m letting you go without a fight.
If you only knew how I fought for you each night.
Just remember that there are signs everywhere.
So look around and acknowledge that they are there.

God said to me that love will always prevail.
And each day there is a tale for you to tell.
If you could already see the signs before your eyes.
Embrace it now. Let it stay. It is your guide.

God said the signs may be a word or two
When you least expect it, it is said to you.
It may also be the people that you have met.
Places, names, or things that you kept.

God told me to tell all these things to you
So happiness would set in and peacefulness, too.
I’m always here, and I’ll always love you.
I never wanted you to be in pain. It’s OK for you to go.

http://authspot.com/poetry/a-poem-about-a-mothers-love-for-her-very-sick-child/?fb_action_ids=3587335596077&fb_action_types=og.likes&fb_source=timeline_og

Physical Symptoms of Depression….


Since Vic’s blotched back surgery in 2002 I have been on anti-depressants. The anti-depressants allowed me to continue functioning; fighting – living. It made life bearable. I was able to survive and support my child through 11 years of hell. The tablets certainly dulled my senses, my emotions. I have also gained 15 kgs in weight.

I have decided that I can no longer rely on medication. I have to take back control of my life. I have to heal. I have to let go of all my crutches.

I know I have to wean myself off the medication… Now that I no longer have symptoms and treatments to research to keep Vic alive, I decided to research depression. It has been absolutely amazing! I will be doing a series on depression and the treatment thereof.


Feelings of sadness, hopelessness, and anxiety are obvious signs of depression. A less known fact is that depression can also cause unexplained physical symptoms. Physical pain and depression often go hand in hand….

Depression has no respect for colour, creed, sex or nationality. Depression does not discriminate.

The exact cause of depression is not known. Depression seems to be related to an imbalance of certain chemicals in your brain. Some of these same chemicals play an important role in how you feel pain. So many experts think that depression can make you feel pain differently than other people. An episode of depression may also be triggered by a life event such as a relationship problem, bereavement, redundancy, illness; or it can develop without any reason; there may be some genetic factor involved that makes some people more prone to depression than others. Women are more predisposed to depression than men i.e. postnatal and menopausal depression….

Depression is quite a common cause of physical symptoms. But, the opposite is also true. That is, people with serious physical conditions are more likely than average to develop depression.

A high percentage of patients with depression who seek treatment, in a primary care setting, report only physical symptoms, which can make depression very difficult to diagnose. Many people suffering from depression never get help because they don’t realize that pain may be a symptom of depression. The importance of understanding the physical symptoms of depression is that treating depression can help with the pain–and treating pain can help with depression.

Physical pain and depression have a deeper biological connection than simple cause and effect; the neurotransmitters that influence both pain and mood are serotonin and norepinephrine. Dysregulation of these transmitters is linked to both depression and pain.

I have noted a common denominator in the lives and blogs of chronic pain sufferers – depression. Pain in its own right is depressing. Depression causes and intensifies pain. Some research shows that pain and depression share common pathways in the limbic (emotional) region of the brain. In fact, the same chemical messengers control pain and mood. According to an article published by the Harvard Medical School, people with chronic pain have three times the average risk of developing psychiatric symptoms–usually mood or anxiety disorders–and depressed patients have three times the average risk of developing chronic pain.

The link between pain and depression appears to be a shared neurologic pathway. Some antidepressants, such as Cymbalta and Effexor, is used to treat chronic pain.

Most of us know about the emotional symptoms of depression. But you may not know that depression can be associated with many physical symptoms, too

In fact, many people with depression suffer from chronic pain or other physical symptoms. These include:

  • Headaches. Headaches is a common symptom of depression. Research found that over a two-year period, a person with a history of major depression was three times more likely than average to have a first migraine attack, and a person with a history of migraine was five times more likely than average to have a first episode of depression.
  • Back pain. Back ache is aggravated by depression. A study from the University of Alberta followed a random sample of nearly 800 adults without neck and low back pain and found that people who suffer from depression are four times more likely to develop intense or disabling neck and low back pain than those who are not depressed.
  • Muscle aches and joint pain. Depression can make any kind of chronic pain worse. According to research published in the Journal of General Internal Medicine, arthritis-like physical symptoms may improve if the depression is treated with medication.
  • Chest pain. Chest pain must be checked out by a doctor immediately. It can be a sign of serious heart problems. But depression can contribute to the discomfort associated with chest pain. A study from the Sahlgrenska Academy, University of Gothenburg, Sweden, indicates several common factors among those affected by chest pain not linked to biomedical factors such as heart disease or some other illness–depression was one of the significant common factors.
  • Digestive problems.  Queasiness, nausea, diarrhoea and chronic constipation can all stem from depression. Studies show that up to 60 percent of people with irritable bowel syndrome (IBS) also have a psychological disorder, most commonly depression or anxiety. According to one study published in General Hospital Psychiatry, those who reported symptoms of nausea were more than three times as likely to also have an anxiety disorder, and nearly one-and-a-half times more likely to suffer from depression. Depression is a possible cause for digestive disorders
  • Exhaustion and fatigue. No matter how much one sleeps, they still feel tired. Getting out of the bed in the morning is very hard, sometimes even impossible. Fatigue and depression are not a surprising pair. Depression and fatigue feed off each other in a vicious cycle that makes it hard to know where one begins and the other ends. Researchers have found people who are depressed are more than four times as likely to develop unexplained fatigue, and those who suffer from fatigue are nearly three times as likely to become depressed.
  • Sleeping problems. People with depression often have difficulty falling asleep, or awaken in the early hours of the morning and find themselves unable to get back to sleep. It is reported that 15 percent of people suffering from depression sleep too much. Lack of sleep alone doesn’t cause depression, but it can contribute–and lack of sleep caused by other illness or anxiety can make depression worse.
  • Change in appetite or weight.  Several studies have found excess weight to be linked with depression symptoms, a history of depression, and other measures of psychological distress (e.g. anxiety). Others suffering from depression experience a reduction in appetite i.e. weight loss.
  • Dizziness or light-headedness.

Because these symptoms occur with many conditions, many depressed people never get help, because they don’t know that their physical symptoms might be caused by depression. These physical symptoms aren’t “all in your head.” Depression causes real changes in your body.

http://www.examiner.com/article/adult-de 1

http://www.patient.co.uk/health/depression

http://www.care2.com/greenliving/9-physical-symptoms-of-depression.html#ixzz2YHErmwr7

http://www.what-is-depression.org/physical-symptoms-of-depression/

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC486942/

http://www.depression.com.au/index.php?option=com_content&view=article&id=25&Itemid=30

I wish that…


IMG_4810Someone wrote a poem for me.  I am grateful for the hand of comfort that was extended by a stranger.  This stranger happens to be ill and suffer debilitating pain.

I was so touched!  Thank you Belinda!!

13JUN2013 by http://busymindthinking.com/2013/06/13/i-wish-that

I wish that I had known you
when you struggled with your pain
but I didn’t know your situation
oblivious even to your name

I wish that I could have offered
an embrace when tears you cried
saying goodbye to your loved one
filled with sorrow when she died

I wish that things had been different
and that she didn’t have to leave
I wish most of all kind stranger
that you have comfort when you grieve

Wonderful Team Member Readership Award


wonderful team member readership award

I admit it openly and honestly – I LOVE getting awards.  I think that deep down we all crave recognition, acceptance and love.  I have found this on Word Press.  I have met WONDERFUL people who have loved and supported me for the past year.   It is a very powerful thing to be recognised by a blogger I find not only incredibly inspirational, but funny and thought-provoking too.

Shaun from Praying for One Day awarded me the Wonderful Team Membership Readership Award,which of course I graciously accepted.  Shaun is one of my favourite bloggers who has become a wonderful friend. The first post of mine that Shaun ever read was https://tersiaburger.com/2013/01/25/vic-has-left-home-for-the-last-time/  Sometime later Shaun wrote me an email or a comment, I am unsure which it was…He wrote that after he read my post he and his partner Dawn cuddled and sat in silence for a long time weeping for Vic.  Shaun always leaves a comment, hug or word of encouragement.  Shaun has been awarded this award 6 or 7 times and with good reason.  He is a Wonderful Team Reader who truly deserves this award!

So here are the rules:

1. Display the logo on your page.

2. Finish the sentence: A great reader is…

A great reader is… someone who takes the time out of his/her busy life to read my ramblings of grief, leave a comment, hug, advice… A great reader is someone who reaches out from cyberspace and cries with me, laughs with me and cares for me.  A great reader is my wonderful WordPress friends!

 

3. Nominate 14 readers I appreciate.

  1. Uma Girish at http://grammarofgrief.wordpress.com/ for her helpful blog on grief and surviving loss
  2. http://wordsfallfrommyeyes.wordpress.com/ is about a mother’s love for her son
  3. http://verbalbanter.wordpress.com a wonderful blog about life and it’s irritations and frustrations.
  4. http://drbillwooten.com/ is a blog filled with good music and wisdom.  Bill you are a kind and gentle friend.  Thank you
  5. http://everyonehasastory.me is a blog of hope and despair, healing and pain.  Excellent read.
  6. http://throughthehealinglens.com  is about a bloggers battle with debilitating, chronic pain. 
  7. http://thedarkest13.wordpress.com/ is an intelligent blog filled with good values, friendships, pain and love. 
  8. http://barefootbaroness.org is one of my favourite blogs. BB is a charming, gentle woman who has magical writing skills.  She is an amazing friend.  Thank you BB
  9. http://idealisticrebel.wordpress.com/ – Rebel is amazing and takes on the world! A brave blogger who is a great friend.
  10. http://jmgoyder.com/ – My precious friend Julie who has so much pain and loss to work through. 
  11. http://picturesofsilverbyjanice.wordpress.com/category/sculptures-silver-art-jewelry/  Janice is the kindest person.  She makes beautiful jewellery and my Christmas Gifts will come out of her innovative jewellery pieces.  I am gifting the boys their Mommy’s fingerprint to wear around their necks – close to their hearts.
  12. http://valeriedavies.com/  A gutsy, wise lady who is a friend and an amazing writer. 
  13. http://walkingthroughpain.com/ writes about “invisible illness” such as RA/Lupus/ Fibromyalgia.  This is a brave blogger who knows and lives with chronic pain!  Please support and encourage her on this lonely journey. 
  14. Tracy Rydzy – http://ohwhatapain.wordpress.com is another brave warrior battling chronic pain.

4. Inform the readers with either comments or pingbacks.

These are just 14 of a long list of treasured blogger friends who are truly worthy of this award.  There are many, many other bloggers whom I treasure and who inspires and supports me in my grief journey.

Thank you to each and every one of my blogger friends!!

Interesting Blog Award


Interesting Blogger award

Big thank you to Shaun, you are a great friend and I happen to be Chairperson of your Fan Club!  Shaun at  http://prayingforoneday.wordpress.com/2013/04/25/interesting-blogger-award/  thank you for this amazing award.  It is my first too!

Award rules.

  1. Thank the person who nominated you
  2. List 5 random facts about yourself
  3. Nominate a minimum of 5 blogs for the award
  4. Ask the nominees 5 questions of your choice
  5. And finally, let them know you have nominated them

5 things about myself

1. I would like to be my friend if I could not be myself

2. I would love to visit Russia – mid winter.

3. I hope to retire in 4 years time

4. My favourite song is “Never Alone” by Jim Brickman and Lady Annabelle –

5. I love reality TV shows and Word Games

I now nominate 5 or more bloggers for this award 

1.    Uma Girish at http://grammarofgrief.wordpress.com/ for her helpful blog on grief and surviving loss

3.    http://verbalbanter.wordpress.com a wonderful blog about life and it’s irritations and frustrations.

4.    http://drbillwooten.com/ is a blog filled with good music and wisdom.  Bill you are a kind and gentle friend.  Thank you

 

6.    http://throughthehealinglens.com  is about a bloggers battle with debilitating, chronic pain. 

 

 

 

8.     http://untraveledroads.wordpress.com/a personal journal of coping with and transcending pain

 

  • 9.    http://geeton1.wordpress.com/ is an amazing blog  of two people, Toni and Gerry, who share a passion to stop Child Exploitation and to bring Missing Kids and Adults, back home safely.

 

10. http://barefootbaroness.org is one of my favourite blogs. BB is a charming, gentle woman who has been an amazing friend.  Thank you BB.

 5 questions for you all

1. Who would you like to be, if you could not be yourself.?

2. If you could visit ANY place on Earth, where would it be?

3. What is your favourite Movie?

4. What is your favourite Song?

5. Why did you start blogging?

Thank you once again Shaun.  You are a wonderful friend and blogger!!

 

The Spoon Theory


Reblogged from http://barefootbaroness.org/2012/02/25/1343/.  I personally witnessed this theory in life with Vic…she lived the Spoon Theory every day.  Thank you BB!

A theory I live by, a theory that saves my life~ It’s also an incredible and thoughtful way to express to people in your world/life what having a chronic illness is like. They’ll get it much easier by relating to spoons of all things~

Thank you to the author of this piece Christine. You have helped me save so many relationships with people who just did not get it. If you have read this before Bravo, you are doing as much as you can to communicate what your life, days are like.

The Spoon Theory

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, The Spoon Theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands. I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted. Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point.

I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control. She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become? I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet.

I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus. I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.”

I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her a spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away.

Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone.

Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night. When we got to the end of her pretend day, she said she was hungry.

I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely.

Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse than others; some days I have more spoons than most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war.

It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”. After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine.

I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness.

Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.

© 2003 by Christine Miserandino Butyoudontlooksick.com