Monday, June 30, 2008
In the spirit of informing those who wish to understand:
These are the things that I would like you to understand about me before you judge me.
Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don't seem like much fun to be with, but I'm still me, stuck inside this body. I still worry about school, my family, my friends, and most of the time, I'd still like to hear you talk about yours, too.
Please understand the difference between "happy" and "healthy". When you've got the flu, you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time. In fact, I work hard at not being miserable. So, if you're talking to me and I sound happy, it means I'm happy. that's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things.
Please don't say, "Oh, you're sounding better!" or "But you look so healthy!" I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you're welcome.
Please understand that being able to stand up for ten minutes doesn't necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.
Please repeat the above paragraph substituting, "sitting", "walking", "thinking", "concentrating", "being sociable" and so on, it applies to everything. That's what chronic pain does to you.
Please understand that chronic pain is variable. It's quite possible (for many, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the next room. Please don't attack me when I'm ill by saying, "But you did it before!" or "Oh, come on, I know you can do this!" If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are, to be physically able to do all of the things that you can do.
Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. You don't know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to "get my mind off of it", may frustrate me to tears, and is not correct. if I was capable of doing some things any or all of the time, don't you know that I would? I am working with my doctors and I am doing what I am supposed to do. Another statement that hurts is,
"You just need to push yourself more, try harder". Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can't always read it on my face or in my body language.
Also, chronic pain may cause secondary depression (wouldn't you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.
Please understand that if I say I have to sit down, lie down, stay in bed, or take these pills now, that probably means that I do have to do it right now, it can't be put off or forgotten just because I'm somewhere, or I'm right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.
If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. Lord knows that isn't true. In all likelihood, if you've heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions, as is the case with herbal remedies. It also includes failure, which in and of itself can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we'd know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It's definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.
If I seem touchy, it's probably because I am. It's not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes,
but as much as is possible, I am asking you to try to be understanding in general.
In many ways I depend on you, people who are not sick. I need you to visit me when I am too sick to go out. Sometimes I need you help me with the shopping, the cooking or the cleaning. I may need you to take me to the doctor, or to the store. You are my link to the "normalcy" of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.
I know that I asked a lot from you, and I do thank you for listening.
It really does mean a lot.
Saturday, June 28, 2008
behind me in the long line at the grocery store.
'You would think the manager would pay attention and
open another line, 'said a woman.
I looked to the front of the line to see what the hold up was and saw
a well dressed, young woman, trying to get the machine
to accept her credit card.
No matter how many times
she swiped it, the machine kept rejecting it.
'It's one of them welfare card things.
Damn people need to get a job like everyone else,' said the man
standing behind me.
The young woman turned around to
see who had made the comment.
'It was me,' he said, pointing to himself.
The young lady's face began to change expression.
Almost in tears, she dropped the welfare card onto the
counter and quickly walked out of the store.
Everyone in the checkout line watched as she began
running to her car.
Never looking back, she got in and drove away.
Several minutes later a young man walked into the store.
He went up to the cashier and asked if she had
seen the woman.
After describing her, the cashier told
him that she had run out of the store, got into her
car, and drove away.
'Why would she do that?' asked the man.
Everyone in the line looked around at the fellow
who had made the statement.
'I made a stupid comment about the
welfare card she was using.
Something I shouldn't
have said. I'm sorry,' said the man.
'Well, that's bad, real bad, in fact.
Her brother was
killed in Afghanistan two years ago.
He had three young children and
she has taken on that responsibility.
She's twenty years old, single, and
now has three children to support,'
he said in a very firm voice.
'I'm really truly sorry.
I didn't know,' he replied,
shaking both his hands about.
The young man asked, 'Are these paid for?'
pointing to the shopping cart full of groceries.
'It wouldn't take her card,' the clerk told him.
'Do you know where she lives?' asked the man who had
made the comment.
'Yes, she goes to our church.
'Excuse me,' he said as he made his way to the front
of the line.
He pulled out his wallet, took out his
credit card and told the cashier, 'Please use my card.
PLEASE!' The clerk took his credit card and began to
ring up the young woman's groceries.
Hold on,' said the gentleman.
He walked back to his
shopping cart and began loading his own groceries onto
the belt to be included. 'Come on people.
We got three kids to help raise!' he told everyone in line.
Everyone began to place their groceries onto the fast
A few customers began bagging the food
and placing it into separate carts.
'Go back and get
two big turkeys,' yelled a heavyset woman, as she
looked at the man. 'NO,' yelled the man.
Everyone stopped dead in their tracks.
The entire store became quiet for several seconds.
'Four turkeys,' yelled the man.
Everyone began laughing and went back to work.
When all was said and done, the man paid a total of
$1,646.57 for the groceries.
He then walked over to
the side, pulled out his check book, and began
writing a check using the bags of dog food piled near
the front of the store for a writing surface.
He turned around and handed the check to the young man.
'She will need a freezer and a few other things as
well,' he told the man.
The young man looked at the check and said, 'This is
really very generous of you.
'No,' said the man.
'Her brother was the generous one.
Everyone in the store had been observing the odd
commotion and began to clap.
And I drove home that day feeling very American.
We live in the Land of the free, because of the
Brave!!! Remember our Troops of Yesterday and Today!!!
A great example of why we should be kind and patient.
Kindness is the language the blind can see and the
deaf can hear.
Never judge someone...until you have walked a mile in their shoes.
May God's many blessings continue
to be with you - ALWAYS!!!
Friday, June 27, 2008
Self-Care -- Relaxation/Meditation
* Take a long bubble bath and light some candles.
* Slow down—and breath deeply…
* Use aromatherapy—relax to your favorite scents.
* Meditate, with a group or by yourself.
* Listen or make music (i.e., play a CD, sing or play an instrument.)
* Get a massage by a professional masseuse – or someone you love…
* Seek out things that make you laugh—remember, laughter is the best medicine!
* Buy a bouquet of flowers to cheer up your surroundings!
* Grow something—commune with Mother Nature!
* Stir your imagination—imagine a pleasant experience, moment, sensation…
* Make or craft something (i.e., knit a scarf, do pottery, etc.)
* Go to an outdoor concert, and don’t forget to pack a picnic.
* Treat yourself to a manicure and/or pedicure. Be a Queen for a day!
* Explore an antique store—lose yourself among the treasures…
* Practice mindfulness—be in the moment…
* Try art therapy (i.e., paint or draw a picture that shows how you feel!)
* Use narrative therapy (i.e., write your pain experience.)
* Keep a gratitude/affirmation log (write down three things you’re grateful for each day.)
* When depression and/or anxiety hits, don’t fight it. Know it’s a part of the natural pain experience.
But don’t hold on for too long…
* Accept that everything you’re feeling is real and normal.
* Take a class, learn something new—and stimulate your mind!
* Wear a bright color—they excite the senses!
* Reflect upon affirming, positive memories…
* Read a great book—or a breezy romance novel.
* Express your true and authentic self. You’re the only you!
* Think positive, affirming things about yourself.
* Take a trip, even if it’s a virtual one.
* Seek support through a professional pain counselor.
* Make a change and surprise yourself (i.e., get a new haircut, try a new recipe, etc.)
* Get dressed up and put your make-up on, just because it makes you feel good!
* Keep a positive attitude, hang in there and keep the faith!
* Practice appreciation for your healthcare providers—more often than not, they’re trying their best to help…
* On a bad day, remember what Scarlet O’Hara said, “Tomorrow is another day!”
* Notice and appreciate the splendor of the season changes…
* Learn a foreign language…or two! Exercise that part of the brain that doesn’t read pain signals.
* Choose something you love, and do it every week, same day and time. A joyful routine gives you something sweet to look forward to…
* Don’t let your pain define you. Remember that while pain is now a part of your life experience, it’s not your identity.
Care of the Body
* Exercise regularly and keep your body moving. Hydrotherapy in warm water is especially effective with pain conditions.
* Eat a healthy diet (fruits, vegetables, lean meats, etc.)
* Avoid or quit smoking!
* Practice good sleep habits—enjoy waking up refreshed and renewed.
* Be open to alternative and complimentary therapies (i.e., acupuncture, guided imagery, etc.)
* Have realistic expectations about therapies (i.e., have you given your physical therapy regimen enough time to help?)
* Educate yourself about your pain condition. But don’t obsess and let it consume you…
* Listen to your body talk—you know it better than anyone else!
* Learn to say “no”—avoid stress by not over-burdening/committing yourself.
* Spend time in the sun—and don’t forget that all-important sun block!
* Practice good posture. A well-aligned and supported spine is virtually guaranteed to help any pain condition.
* Do something nice for someone—it feels good, and that energy is sure to come back your way.
* Learn to forgive those who have disappointed you throughout your pain experience; anger is further fuel for pain!
* Adopt a pet. Unconditional love is good for the soul…
* Give someone a hug—who knows, you might just get two back!
* Volunteer for your favorite charity, school or organization. Doing good is chicken soup for the soul!
* Throw yourself a party. Celebrate an accomplishment with family and friends!
* Get involved in your community (i.e., attend neighborhood council meetings, help plan a block party, etc.)
* Seek out fellow chronic pain sufferers through on-line discussion boards and support groups at medical centers. These bonds could last a lifetime.
* Don’t forget about lovemaking with your partner. Intimacy is second to none to revive the soul and senses!
* Spend quality time with a child or children (yours, nieces or nephews, etc.)—they’ll help you see the world with eyes of wonder!
* Have an afternoon tea with some girlfriends.
* Accept an invitation to a party or other social event, even if you’re in pain. It’s great misdirection—and you’ll probably find yourself having a dandy time!
* Be open to talking to family and friends about your pain experience—and answering their naturally inquisitive questions. If they’re curious, they probably care. Try not to shut them out…
* Remove toxic people from your life—as stress and strain that comes from bad relationships makes pain worse. It’s appropriate to walk away from inappropriate people!
* Remember it’s your body—and ultimately all possible treatment options are your choice.
* Be prepared for your doctor visits (i.e., have questions ready, be educated about your pain condition(s), etc.)
* Partner with your doctor. You’ll get better pain care results if you work as a team.
Find a good advocate at your health insurance company.
* Bring a family member or friend with you when you go to a doctor’s appointment. They can advocate for you—and it’s good for your doctor to know someone cares and is watching out for you.
* Examine and weigh your therapy options—the biggest “guns” may not be the answer for you.
* Don’t let your doctor pressure you into a therapy that you don’t want to do!
* Interview your pain management provider (i.e., What kind of therapies do you support for my condition?, Are you open to alternative/complimentary therapies?, etc.)
* Remember, one size doesn’t fit all when it comes to pain treatments. We’re all unique—and what helps one person may not help another.
* Seek out references with any doctor referral (i.e., talk to other patients, look up his/her standing with the state medical board, etc.)
* Make sure your treating healthcare professional is assessing your pain level during each visit—remember, pain assessment is “the fifth vital sign.”
* Find out if your hospital and/or clinic has a “Patient’s Bill of Rights”—and if so, make sure your treating healthcare professionals are following it.
* Learn about the potential side effects of any and all medications you are considering or presently taking. Sometimes their adverse side effects can create more harm than the problem you’re taking the medication(s) for.
* Run—don’t walk!—from any physician or other healthcare professional who doubts, dismisses and/or discounts your report of pain!
* Encourage your family and friends to educate themselves about your pain condition(s) (i.e., provide them with website resources, articles, etc.)
* Educate yourself about all of your therapy/treatment options (including complimentary and alternative choices)—this will enable you to make the best, most informed decisions about your pain management care.
* Using a rating scale such as 0 to10 (0 = no pain, 10 = worst pain) is a useful way to communicate your pain to others and assess changes in your own pain.
* Use the rating scale to rate how much relief you are receiving. For example, if your pain therapy relieves your pain from a “10” to a “7”, this is a good step. But knowing your pain is a “7” should suggest that you still require additional help.
* Prevention of pain is key. Anticipate things that bring your pain on (exhaustion, dehydration, stress, etc.) and make every attempt to prevent pain versus responding only when it happens.
* When taking pain medication, always consider what non-drug treatment you could use along with it. Using heat/cold/massage/relaxation can diminish anxiety and distract you from the pain until the medication can begin working.
* Discover accurate and effective words to describe your pain (i.e., burning, stabbing, aching, pins and needles, electrical, throbbing, etc.) to help your healthcare provider with diagnosis and treatment.
* For chronic pain problems, it is generally better to take medications on a regular, around-the-clock schedule rather than only on a “prn”/as needed basis only when pain is severe.
* Fortunately, there are many choices of analgesics (be it traditional, complementary or alternative)—so if a particular pain therapy that has been prescribed doesn’t work or causes side-effects, ask to try another.
* In general for chronic pain, long-lasting medications are preferred to offer several hours of undisturbed sleep or activity.
* If your doctor prescribes physical therapy, be sure to find a therapist you have a repore with. Explain your symptoms carefully, and go over your doctor’s report together. Also be sure to immediately alert your therapist to any pain you’re experiencing as a result of a therapy exercise.
* “Breakthrough pain” is pain that occurs in episodes between doses of medications. Discuss this with your physician to determine if breakthrough medications are needed.
* Inactivity or decreased function is a major problem in chronic pain and results in muscle weakness, dependence, depression—and this cycle only worsens over time. Try to maintain activity if at all possible.
* Depression and anxiety are generally an integral part of the pain experience—and can become severe. Don’t hesitate to tell your pain management provider about these feelings and indeed ask for a referral for a support group and/or psychologist. Your doctor should know psychologists who specialize in pain.
Together, we THRIVE!!
Monday, June 23, 2008
I did get to test the SCS out pretty good after my 2 doctor appointments though. When we got back to Granbury, my parents wanted to eat at this one restaurant but the "coupon" they had wasn't good until 5pm., so we have a couple hours to kill. We went into my favorite type of store...Staples...I love office supplies for some reason. Then we went into this new show store that was having a 60% off sale to see what all they had. I tell you what, you would have thought we walked into Dillards without them having a sale, needless to say we didn't buy anything in there. Then we went into Beall's, my mom's back was already killing her so she sat down at the make-up counter and waited for me and dad. Dad went one way and I went the other. We walked around in there for at least an hour or more and believe it or not, I didn't buy a thing but my dad bought a shirt.
Finally it was time to go to the restaurant. We get a booth and I go to sit in and scoot across, as you do, well this was a non-scooting seat!! And to make things worse, the side that I had sat down on to scoot with was my left side where the battery is in my butt.....yes....it hurt because it pulled to bad!! I made one of those air sucking noises and my parents looked at me like I was crazy, then it was my mom's turn....she couldn't scoot either!! Of course it didn't hurt her, but she then knew what my noise was for....hahahaha
Then when we got home, I was so tired and sore all I could think about was changing my clothes, taking my meds and laying down. And I did just that!! For the next couple days I was totally worthless. I so paid for the excess in movement I did and knew I wasn't suppose to!! Bet I don't make that mistake again...hahahahaha.
Well, that about catches you up with today, so I will close this out for now.
~Have An Amazing Day~
Thursday, June 19, 2008
Wow Everyone I have got to tell you all something....I have lost an entire day by sleeping it away. I have been doing some amazing visualizations for relaxing so I can heal better from the surgery, well maybe not better but faster and easier on this old body...hahahahaha. And I tell ya, it has been working so very very well that Tuesday night I went to sleep with these beautiful images in my head and the next thing I knew it was noon Wednesday. I ate a sandwich, took my morning doses of meds which is consists of Lyrica, Tramadol, and Lexapro...then I took my vitamins, crawled back into bed, got comfy again and I was out!! I woke up again at 7pm to go potty, went in and said Hi to my mom, eat some dinner that she saved for me,(God Bless MOMS!!) because I missed eating with them, took my evening meds which consists of Lyrica and Tramadol, crawled back into bed, got comfy again and I am just now waking up again and it's after 2am Thursday morning....so I completely missed out on the entire day. And I contribute it all to the relaxation techniques that I have been doing.....it has been simply amazing!! I must admit that I do feel really good right now and ready to tackle the world, but I know I must stay in this bed at least until 7am when I can get up, shower, and get ready to head out for my 2 doctor appointments I have along with some other running I would like to attempt for the first time since having surgery....curious as to how this SCS really works and I am ready to give it a good work out!! Staying in this bed is about to drive me insane, I mean I can't even sit in the living room with my mom or anything, I mean I totally understand why they would prefer me not to move too much but crap ola man, this has been long enough and I need to test drive this puppy I have driving inside me!! Gotta make sure I got my money's worth ya know!!
Wonder if I will be able to go home this weekend....I would love to, but not sure if I can or not. I was doing the math and it has only been a little over 2 weeks since the surgery....man it feels so much longer.....and since the doctor explained to me where all the stitches are and how there are so many that they don't even count them and how I have to heal from the inside out....well I have been taking that all into consideration and I am now starting to doubt if I can drive the 2 1/2 hours to make it back home this weekend, but the testing today will let me know exactly how much I can take or not take. Should be a really good day of testing, with lots of trials and tribulations, but one I am sure I will conquer!!
Of course I will let you all know how it all went, but I can't promise it will be tonight, I might be sleeping my life away again....hahahahaha.
Anyway, just wanted to share that with you all because I am having such an amazing experience with the visualization techniques for relaxation...of course it is part of my coaching packages, but I hadn't had a reason to try it on a healing issue when surgery is involved....but it really helps!!
Hope everyone is having an Amazing Day!!
Wednesday, June 18, 2008
How did I come to blogger? A sweet lady named Vivian has a blog on here called Danieldoo her link is www.danieldoo.blogspot.com and I really like the set up she has on her page, I decided I needed another blog to try and keep up with...hahahaha.
Anyway, I hope to meet some wonderful people here that I can become friends with, encourage, or just help get through a rough day.
So, until we meet.....
~Have An Amazing Day~