Sunday, October 24, 2010
Just Take Something
Tuesday, April 27, 2010
A "Bit" About Me
Learning How to Encourage and Help Someone Living With a Chronic Condition

What to Say or Do!
Learning How to Encourage and Help
Someone Living With a Chronic Condition
Copyright © 2004 The Invisible Disabilities Advocate
Have you ever wanted to encourage someone living with a chronic illness, but it seems like you never know what to say? Moreover, when you finally think of something you just know will make them smile, do they snap back at you with frustration?
Well, you are not alone. Because we truly want to help our friend or family member with a chronic condition, we often try to think of just the right words we can say to make all of the pain vanish from their life. If we can just “fix it” then we will not have to see them suffer anymore. Unfortunately, when we do try to come up with a quick answer, we often end up saying something that seems to irritate or offend our loved one.
It is difficult to understand why they got upset, because to us what we had to say should have been helpful. Nonetheless, if we could simply jump into the life of our loved one, then we would see why our well-meaning comments were not so well-received. Often, it is our intention to help them “see the bright side” of their situation, so they can realize it is “not that bad.” The problem is that we have then failed to acknowledge their battle isvery real and we have gone on to minimize its impact.
Sometimes we even try to point out another person who is “worse off” or try to relate by saying, “Ya, I am tired too.” Often, we disregard their limitations by attempting to talk them into doing what they know they cannot or should not do. Because we forget how anguishing it is to be ill and laid up, sometimes we even try to tell them “how lucky” they are to not have to work or clean their house.
What’s more, we cannot resist acting as if solving the problem is so simple when we exclaim, “why can’t you just take this or do that?” Likewise, we want so badly for them to be feeling better, that we refuse to hear the truth and do not allow them to be open and honest with us about what they are going through.
Besides not knowing what to say, we often do not know what to do. We often wish we could do something to help, but do not even know where to start. Our own lives can be so overwhelming and busy that we could never fathom having the time to run errands, do chores and help clean someone else’s home too!
Nevertheless, what we fail to realize is that what might seem like an insignificant effort to us, may save our loved one an entire day or even week’s worth of energy. For example, we can pick up a few things at the store while we are already there and take out the trash when we drop them off. We can drop them by some fresh flowers, deliver a meal, bring over a video to share or pick up their dry cleaning. None of these takes much ofour time, but it can make a world of difference to them!
In all, we can never fully comprehend what it is like to have a chronic condition, with all of the loss and pain it poses. Yet, we know we would not want to feel this way ourselves, so surely we can see what courage our loved one displays! We can even try to remember what it is like to have to put our lives on hold for even just a few days and tell our loved ones how amazed we are at their strength and perseverance!
People living with chronic illness/pain would never choose to willingly give up activities they used to enjoy! In fact, they would do just about anything to get their lives back! Therefore, we can rest assured, knowing they will keep fighting, researching andpursuing ways to regain their lives or at least prevent further progression of the disease.
Yes, acknowledging what is happening to a loved one means having to deal with all of its pain, mourning and changes, but do not sell yourself short! After all, if they are forcedto live with it, we can certainly choose to live next to it!
But You LOOK Good!

The Paradox of Looking Good, but Feeling Bad
Copyright © 2004 The Invisible Disabilities Advocate
Surprisingly, "More than 125 million Americans have at least one chronic condition and 60 million have more than one condition" (Partnership for Solutions). An illness or injury is considered chronic, when it lasts a year or longer, limits activity and may require ongoing care.
Not everyone with a chronic condition has the same symptoms or degree of symptoms.Some have mild complications and with a little adjustment in their diets or schedules, they can lead a pretty “normal” life. Some have to make bigger changes, sacrificing various activities or their work situations in order to contend with their conditions. Othersbecome so ill they are unable to work at all and struggle just to meet life’s daily needs.
Just about every one of us has experienced being so sick we had to stay home from work or school, because we were too sick to go. We hate being sick, because the time ticks by, the work piles up and we cannot do anything about it. We gripe and moan that we “don’t have time to be sick!” even for just a day. It is just plain miserable to be sick, in pain and debilitated - nobody enjoys it.
Often when we come across someone who says they have been sick and in pain for a long time, we might think they are either exaggerating or they are not doing something about it. After all, when we got sick, we got some rest, took some medication and were soon back on our feet. Moreover, when we were sick, we were pale and droopy, but they often look “perfectly normal.”
The truth is, most chronic conditions cannot be seen with the naked eye, but nevertheless are persistently keeping the person from enjoying life the way they once knew. For instance, a person can battle extreme fatigue and/or cognitive impairments on the inside, even though they may appear healthy and well on the outside. Just the same, a person can have horrible pain and/or dizziness, despite the fact that to the onlooker they may look strong and able.
The biggest grievance those with chronic conditions have is that their loved ones often do not believe what they are going through is real, because to others they “look good.” Sadly, this makes the person feel as if they are being called a liar or a wimp. This can cause great strains on relationships between friends, family members and spouses. Ironically, those with chronic conditions would like nothing more than to gain complete control of their lives and not have to adjust to any limitations at all! Nonetheless, their bodies do not always cooperate with their desires, no matter how much they want it to.
Regrettably, a travesty occurs when the person not only has to contend with no longer being able to do what they love to do, but also has to battle for their loved one's belief, respect and understanding. While the person with the illness/pain is mourning their loss of ability and freedom, others often accuse them of just being lazy or malingering.
We must resist the temptation to make a visual diagnosis by coming to the conclusion that our loved one must be embellishing their situation or trying to pull the wool over our eyes, because to us they “look fine.” After all, when we rebut what they are telling us with, "But you LOOK good," our friend really hears, "But, I don’t believe you, because I can’t see it."
Frankly, it is impossible for us to be compassionate, until we have acknowledged there is a situation for which to be compassionate! In other words, how can we say, “I amsorry you are sick,” when we are always saying, “I do not believe you are sick, because you don’t look sick?”
People living with chronic conditions do not want to give up! They make efforts to laugh, smile, look their best and enjoy life, even though they know they will pay dearly for it. Because of this, we should not confuse their endeavors to live life and be positive, with assuming they are feeling well or doing better. Instead, let us commend them for their incredible courage, perseverance and persistence that make their illnesses and injuriesseem invisible to us.
Lyme Disease Crash Course - Everything You Need to Know in 5 Minutes
I want to raise awareness of this. I feel like I NEED to raise awareness. I am one of those people who never even knew I was bitten by a tick and never had the "tell tale bullseye rash." Doctors suspect I had the disease for close to 10 years before I tested positive and was diagnosed. Most, if not all, of my health issues stem from this. WE NEED TO RAISE AWARENESS!!
*This was me. I didn't even know I was bitten by a tick. I never got the "bulls-eye rash." No doctor ever thought to test me for the disease since I lived in Idaho and Utah (even though I had traveled to the east and south quite a bit). I knew I had health problems, but I NEVER would have suspected Lyme Disease. Not until I had a doctor "just check" for it a couple of years ago. And lo and behold the blood test came back positive. It had sat in my system for years.
*These symptoms, if caught early, can be erradicated. However, if the disease lays in your system for years (like mine did) without being diagnosed, they can wreak complete and utter havoc on your body. Some "issues" of mine that can most likely be traced back to Lyme Disease are Arthritis, Fibromyalgia and Infertility. There are 72 things listed here and I have had 51 of them happen to me since doctors think I was bitten by a tick in 1999. (I wasn't tested positive and diagnosed until 2007 - that's a span of 8 years that it sat in my body just wreaking havoc!) Before I was bitten, I only had experienced 5 things on this list!! There's a huge difference between 5 and 51! That right there tells you how crazy the effects of a tiny little tick can be on a human body!!
Monday, April 12, 2010
The Green Eyed Monster (from the Fertility Resilience blog)
Sunday, April 4, 2010
Thoughts
Thursday, October 29, 2009
This time, you're playing for immunity
Obviously ...
May



Thanks to all of you for your love and prayer and concerns. We love you.
Here's the email we got today:
Dear Ms __________
I really do not know what to do.
When I spoke with you, it was agreed that there was a process that needed to be followed. You then suggested I speak to Ms _______, which I did.
Ms ______ confirmed that the first step would be to find out whether both children were adoptable. It seems that there was a rumour that the child/children could have extended family living in a neighbouring community.
Two options were discussed, one finding the family by physically going in to the community, the other, by advertising to see if anyone would come forward with information.
Ms _____ advised that the advertising costs were very high – each advertisement would cost over R1000 and this was a major problem for your organisation. I offered to seek assistance to pay those costs. I asked Ms _______ to find out exactly what the advertising amount would be.
I took care to explain that this did not mean that there were conditions attached to such payment – the advertising would purely be to find the children’s families, if they exist, with a view to helping the children reunify with their families if the families were able to suitably care for them, alternatively, if no family came forward, to approach the courts to see whether the children could be declared adoptable. The possibility of the family/families consenting to the possible adoptions of the children was also discussed.
My strong sense after the discussion I had with you and with Ms ______ was that we were all working together for finality for these children.
However, when our Ms ______ attmpted to follow-up and find out exactly what amount would be required so that we could pay for the newspaper advertisements, we were told not to interfere with the process and reference was made to our “forcing the issue”.
There are two options for these children: either no-one does anything to finalise their future and they stay right where they are for the remainder of their childhood, alternatively, we work together to give them the stability and security that they deserve. This may well be with their birth families, but until a proper investigation is done, it is impossible to tell.
We have decades of experience in working with children, heading up teams of social workers, paediatricians and counsellors through courts ranging from the local Children’s Courts to the Supreme Court of Appeal and to the Constitutional Court. We remain committed to ensuring that children’s best interests are served.
We have seen children thrive and flourish when placed within the nurture and care of a family environment, and steadfastly believe that every child deserves a family.
It is not fair to the two families, who have already spent years being screened from their side by their country’s authorities and who have been highly recommended as adoptive parents to continue pouring their hopes and dreams into a lifetime with these children.
It is even more unfair to the children themselves, as every week that goes by is time that needs to be made up.
If you have no intention of allowing these two children to find that security within a family and you insist on misconstruing everything that we are trying to do to find out what would be in these children’s best interests,please be gracious enough to let me know.
At that point, the families will have a decision to make – to either accept that you do not intend assisting these children in finding family care, alternatively, to instruct us to approach the highest authorities in our country to request that an investigation be conducted to find out what would be best for these two little people.
My offer to pay directly to the newspaper/s the costs involved in advertising for the families of these two children to come forward remains in place.
However, this whole saga cannot drag on indefinitely. You told us to wait until the beginning of May; it is now almost the end of May and we seem to have regressed rather than making any progress at all.
Yours sincerely
June
________
I drove out to _______ Court early this morning to spend time with the Children’s Court Commissioner there before he went into Court – he was horrified to hear how things have been delayed…
I would like to send an email with the little information that we have on the children to the ______ Children’s Court Commissioner, asking her to please confirm that these children fall under her jurisdiction and further asking her to formally request, with time limits, proper information and a detailed report from the social worker so that we can ascertain whether these two children are adoptable. I will reiterate our offer to assist with the advertising costs.
You need to know that this is a risk. The Commissioner may refuse. Even if she agrees, it will in all likelihood burn bridges once and for all with the Director and social worker at the Home. The report that is provided (if it is standard) will not suffice for Hague purposes and we will need thereafter to get an additional social worker’s report filed to properly meet all requirements. That could also be difficult if the Home and its Director and Social worker refuse to co-operate.
Having said all that, I really do not think there is any other option for these families, and for these children.
Please would you confirm that I can go ahead and email the Court, with the request that they insist that an investigation is done so that the Children’s Court enquiry can be finalised, even though it is high risk?
I look forward to hearing from you.
With kind regards,
___________________









