A Letter From Mom and Dad

Get the tissues out because this is a tear jerker.  Pass this on to your older adult children.  Remind them.  They tend to “forget” with their busy lives and don’t see your’s slowing down.  I remember one day not long ago when my son said to me “Mom, I want the old you back, you’re so mellow now”…if he only truly understood.  But how can he, he’s 23 and starting his own life.

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Freedom Of Speech Doesn’t Make You Less of An Ass

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I have taught my son growing up (and he hates this expression) “everything you do or say affects others around you.”   I understand “Freedom of Speech” but that doesn’t make you less of an ass for abusing that right.  What I mean about that is :just because you can, doesn’t mean you should” (a quote from the book Acheron by Sherrilyn Kenyon)

Everyone does have the right to their own opinion, their own ideas etc. but they don’t have the right to be a jerk about it.  Use your head, use your common sense, people have feelings.  I’m sure your feelings have been hurt at some point in your life.  Think before you speak.  If I said everything that came into my head I’d probably be burned at the stake.  Do they still do that?  Anyway you get it.

You know you see people riding in disabled carts at the store.  First thing I notice is a person will “inspect” them and make a decision upon what they “see” that person “can’t be disabled” they look just fine, or, “well if they’d lose some weight maybe they could walk”…ok that one pisses me off more than you can imagine.  That is a whole different topic.

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This is me, Chronic Gal….now making a snap judgement I look fine and healthy don’t I?  But if you see me with a cane or using a wheelchair because I LOOK good that means you can say to me out loud “Well maybe if you exercise more, or go back to work or……….”  Really?!  Your Freedom of Speech just set me back mentally about a week of feeling hurt and start questioning myself.  Freedom of Speech does NOT give you the right to be an ass!

I just ask, think,……..before……….you speak…..will what you say possibly hurt someone?  Being truthful, honest or exercise your right to open your mouth…comes with some sense of responsibility and common sense on your part.  I hear all the time “I don’t care, I can say what the fuck I want” or when asked why they can say that “because I can its my right, my freedom of speech”  :::::rolls my eyes::::: whatever….people need to learn some tact.  I guess I am “old school” when it comes to manners.

Tact you can click the link and learn about what it means (if you don’t already) hey, not being a smartass I’ve learned that many of our younger youth have no clue.

Alright, I’m done preaching.  I am all about Freedom of Speech I would just like people to take a step back and consider if what they feel they need to say will make a difference in the world or may someone’s world hurtful.

Peace Love & Light

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Who The Hell Knows?

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Over the years of fighting Fibromyalgia and a basket full of “other conditions” (I ran across a lady who put it this way and have adopted it lol) you get so sick of hearing the wars of is it real or made up (riiiiiiiiiiiiiight we all just have nothing better to do than have our lives turned upside down) is it all in our heads, no wait it’s in our neurological system….oh no no WAIT it’s……Who the Hell knows?  I sure as hell know it’s “not my imagination”.

In other words nobody has a clue as to where it comes from or what causes it but there sure are some interesting stories and theories.  Most of which I totally ignore.  I mean really, please, throw me an anti-depressant for my pain in my hips ya that will work NOT…..uhhhh thanks but you’re dumb.  Just because I was a nurse doesn’t make me a know it all but I do have common sense.  I know it’s real, I know what my CI has done to me and changed my life so BITE ME.

There is a theory I am a bit interested in today.  Ok so I am a survivor of severe physical and mental child abuse (ya we’ll save that for another time just know that) now I was repeatedly kicked in the head, neck and shoulders and they went for the hips when I was down on the floor.  All of which Fibromyalgia attacks.  Hold that thought.  I came across this article on a site for Adult Survivors of Child Abuse. Now this article is NOT saying its “all in our heads” it is saying damage sustained over years and years of my body taking abuse could have reacted and broken down my immune system….food for thought.  Okay so take a read and well talk some more.

Effects on physical health

Childhood abuse doesn’t just affect the mind – it affects the body too. Children who feel perpetually in danger grow up with a heightened stress response. This in turn heightens their emotions, makes it difficult to sleep, lowers immune function, and, over time, increases the risk of a number of physical illnesses. Adult survivors of child abuse are at increased risk of chronic pain and fibromylgia, gynaecological problems, irritable bowel syndrome, diabetes, arthritis, headaches, cardiovascular disease, and chronic fatigue syndrome. Adult survivors of child abuse are also more likely to smoke and drink more than other people in the community, and be less physically active. These factors all impact on the burden of ill health in many survivors’ lives.

Now, I’ve read it and the only thing that is off target for me is “less physically active” until I got so sick I was a person always on the run, working double shifts etc. I didn’t become less active until I got sick.  Okay so a person may come across this and has never dealt with abuse so this theory will be thrown out the window and back to square one but I will say this.  I had a Neurologist who was testing my functions etc one day and out of the blue he asked me “did you suffer any deep physical abuse in your life” and I just stared at him like uhhhhhhhhhhhhh and then told him briefly (after all he’s not a shrink lol) he then told me he feels strongly that people who suffered the blows to my body that I did, those who were in a severe car accident SOMETHING that hurt the neuro system could be a primary cause for the nervous system to “break down” and “malfunction”.

Once again “who the hell knows” but it certainly made for more food for thought.  Personally I don’t think FM is a “mental illness”.  I have always believed it has to do with our neurological system, a neurological disorder of the brain.  MS is a neuro illness and FM mimics it to the letter.  Coinkydink?  I think not.  There is a test that a neurologist can run but the FDA refuses to make it possible.  That is a spinal tap of our fluids in the spine and check our  substance P this is one way many doctors feel can give some answers to FM.  But it’s too “expensive” to have done so let’s not approve it.  Hey I sure as heck don’t want to do a spinal tap…been there done that for a pregnancy a long time ago and ummmm ya they suck….but if it can give me/us more answers, maybe help go in another direction on RESOLVING our illness or maybe putting into a remission so we can search for a cure…..I’d do it in a heartbeat.  Would you?

So, what is your take on this blog post?  Was just food for thought really.

Hope you’re having a pain free day!

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Jamie Volner Tucson Arizona

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10 Commandments For Interacting With The Chronically Ill

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Trust me when I say before I got sick as I look back speaking to other people who suffered from chronic illness I would say “I understand”.  Well let me just say for the record I was an idiot.  You would think I’d know better being a retired nurse but the thing is unless you walk a mile in someone else’s shoes or at least read up on their condition and learn everything you need to be a bit more “understanding” with what you say. Most people mean well and in their defense how CAN they understand.  Well, there are many ways but as I’ve found out not many want to do it.  Talk to your friend and/or family member, ask them questions and learn more about the illness and your loved one..

I found this article online and wanted to share it.  Please, take a few minutes out of your time to learn about those who suffer from a chronic illness.

“But You Don’t LOOK Sick” 10 Commandments For Interacting With the Chronically Ill – ©2006 Susan Williams, PublicHealthAlert.org

In the realm of chronic illness, one of our more challenging tasks can be gaining support from others. As if finding a knowledgeable and caring doctor wasn’t difficult enough, finding caring and supportive friends to surround ourselves with can be even more difficult. Most people are simply not capable of understanding, unless they have the misfortune of a chronic illness of their own.

How many of us have heard something along the lines of “But you don’t LOOK sick…?” It makes one wonder how a sick person is “supposed” to look. If one were to hobble around on crutches, would their illness suddenly become more believable? Our society understands the visible, physical manifestations of illness, such as a broken bone in a cast or hair loss from chemotherapy. What many fail to grasp is the subtle, invisible manifestations of chronic illness. Symptoms such as pain, severe fatigue, and cognitive impairments are not easily visible to the average observer, which means that sufferers of chronic illness often look “just fine”.

Our society is all about instant results – the mindset that we can just pop a magic pill and all our troubles will go away. When sufferers of a chronic illness do not quickly “get better”, we are often treated as if it were somehow our own fault. We may even be told that we are “hypochondriacs” or that “it’s all in our head”.

Remember when you had the flu? You were exhausted, achy all over, and could hardly get out of bed. But, fortunately, the illness passed and you were back to your old self and usual activities.

Now, imagine if you had never recovered from that flu. Every day, you wake up achingly sore and as tired as if you had not slept at all. Imagine trying to go through your usual activities while feeling this way. Not only do work, school, and regular tasks of daily living become near-impossible, but so do the smaller day-to-day things that so many take for granted, such as simply washing your hair or paying the bills.

It is stressful, it is exhausting, it is depressing… and yet the chronically-ill person continues on in the face of it all.

For those of you who may have, at some point, been the perpetrator of an otherwise well-intentioned comment, please understand that our illness is just as real as that of an amputee or other “visible” illness. To help aid those of you who wonder how to interact with a chronically ill person, allow me to present the Ten Commandments.

1. Thou Shalt Not Imply That We Are Not Truly Ill.
You will not convince us otherwise with remarks such as, “You LOOK good,” or “But you don’t LOOK sick.” Even if you meant them as compliments, we perceive those kind of statements as insults because they imply that you do not believe us.

2. Thou Shalt Not Imply That The Illness Can Be Easily Fixed.
People with chronic illnesses are persistent, if nothing else. We hang on, day after day. We see countless doctors, take numerous medications, do endless research, and continue hoping that the answer is just around the next corner. So please do not insult us by delivering diagnoses, remedies, or comments such as, “Why don’t you just…” or “Have you tried…” or “You should….” If it truly were that simple, I assure you that we would have done it already. We are sick, not stupid.

3. Thou Shalt Not Imply That We Brought This On Ourselves.
We did not choose to become ill, just as we do not choose to stay ill. Simply having a positive attitude is not going to solve our problem. One would never imply that a quadriplegic chose such a trial for themselves, or could get better “if they really wanted to”. Please afford chronically ill patients the same respect.

4. Thou Shalt Not Insult or Argue With Our Limitations or Behaviors.
If people with chronic illnesses push ourselves too hard, we can suffer serious consequences. Most of us have developed coping mechanisms to help us survive, and it is cruel to expect us to do more than we are able. One chronically-ill woman I know was actually told, “I wish I could have the luxury of sleeping all day.” Believe me, we would much rather be out working, playing, spending time with loved ones, participating in normal activities.

“Sleeping all day” is not a luxury for us – it is a critical necessity, one that we must take in order to protect whatever remaining health we have. Perhaps it may help to think of it in terms of being one of the medications we need to take. If you wouldn’t think of denying a diabetic their insulin, then don’t think of denying the sufferer of a chronic illness their critical need, whether it is a mid-day nap, avoidance of certain foods or environmental factors, or something else.

5. Thou Shalt Not Imply That You Can Relate To What We Are Going Through.
Unless you have a chronic illness of your own, you cannot possibly understand just how much suffering is happening. Of course you want to be compassionate and want to relate to people. But when you try to do this by telling a chronically-ill person that you are always tired too, it tends to make the person feel that you are minimizing their suffering. Try saying something more along the lines of, “This must be so hard for you,” or “I can’t imagine what you’re going through.” It really does make a difference to us.

6. Thou Shalt Be Mindful Of Other Family Members.
Chronic illness doesn’t just affect the person who has it, but the whole family as well. The trauma of the illness can evoke feelings of fear, depression, anger, and helplessness in all family members. The balance of family dynamics will most likely change, especially if it is a parent who is ill. The healthy spouse may end up taking on an overwhelming amount of responsibility, and even children will likely be involved in helping care for the ailing family member. Please keep these others in your thoughts as well, and make an effort to direct some special attention to them, without any mention of illness or disability.

Individual family members adjust in different ways and at different paces. All members might benefit from counseling to help handle the stress involved, and each family member also needs to have time to pursue their own individual interests. External support from friends, neighbors, extended family, religious institutions, and support groups may help ease some of the burden.

7. Thou Shalt Acknowledge Our Efforts and Celebrate Even Our Small Successes With Us.
For the chronically ill, any day that we can accomplish a task, no matter how small, is a “good” day! Our lives are often measured in terms of doctor’s visits and lab work, and our “success” measured by a rise in Natural Killer cell counts in our blood, or actually completing an entire load of laundry in just one day. Please do not look at us as if we are joking when we share these celebratory moments with you.Celebrate with us, be happy with us, and do not kill the moment by announcing that you just completed the Ironman Triathlon in record time.

8. Thou Shalt Offer Thy Specific Help.
There are so many ways to help — the most difficult part is usually getting a chronically-ill person to accept that help. They do not want to feel like a “burden”. If you offer a vague, “Call me if I can help,” the call will probably never come. But if you are sincere, consider extending offers of specific help, such as a ride to a doctor’s appointment, or picking up a few groceries or the dry cleaning. These activities can be done in a way that does not add any extra burden to your own schedule. If you have to go to the grocery store for your own family, it really isn’t much extra work to grab an additional loaf of bread and jug of milk. If you have to swing by the post office, getting an extra roll of stamps or mailing an additional package isn’t much extra effort for you – but it can save a chronically-ill individual a lot of time, energy, and exacerbation of symptoms.

9. Thou Shalt Remember Important Events.
I’m not just talking about birthdays and Christmas. A major doctor’s appointment, lab test, or new medication are all important events to the chronically-ill person. Try to sincerely ask, “How was your appointment? How did the lab test go? How’s your new medication?” The chronically-ill person will appreciate that you remembered, and that you cared enough to ask about it.

10. Thou Shalt Get To Know The Person Behind The Illness.
The illness may be a part of us, but it’s not a part of who we ARE. We want to be known as more than “that sick person”. You may discover that we have a wickedly funny sense of humor, a creative imagination, musical talents, or any number of things that better describe who we are, and what we would rather be remembered for. (It makes for better gift ideas too — rather than presenting us with yet another self-help book on the power of positive thinking, now you can give us a CD from our favorite singer or movie of our favorite actor instead.)

Most of all, please remember that the chronically-ill person is more than worthy of love, friendship, and support. Most chronically-ill people I know are the toughest nuts I have ever met. Indeed, I have come to believe that a chronic illness is not for wimps – rather, only the toughest of the tough can continually face the struggles of life while battling a debilitating disease. That kind of grit deserves nothing less than pure respect and admiration, even from our toughest critic — ourselves.

I hope this gave you some insight and please feel free to share just remember to give the original author credit.

Until next time,

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Jamie Volner Tucson Arizona

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