Where have I been?? =)

I have received numerous emails from you, my readers and followers, asking where I am; what I'm up to; and if I am doing alright. I can't begin to tell you how very sweet that is of you, and you know who you are, and how blessed it makes me feel. I couldn't believe it once I got to each of those emails and read the words of encouragement, prayers of well being, and outreach of concern - support, and all around love that each one held. I was so moved, they brought tears of joy along with a few chuckles, and I loved them all!!

So I am going to update you all on what all I have been up to that has kept me out of pocket for so long....

As you know, at the first of the month I participated in a Sleep Study to try and get some solid answer as to why I keep uncontrollably falling. I did that on the 3rd through the 4th and on the 10th I went to hear the results, here's how that went;

I woke up at 6:30 am to start getting around and ready because my appointment was at 10:15 am and the drive over is about an hour. So I showered, fixed my hair, got dressed, and went into the kitchen with my make-up kit (it looks like a make-up artist should own this kit...hahahaa) and sat at the table with my mom, enjoyed the a/c & fan blowing in the room - but not on me, and put my make-up on. We talked, drank coffee, and ate some toast, and we both took our meds at the same time, of course her's are different than mine, but it was kind of funny that after we finished our toast we both reached for our medicines. Usually my mom goes with me to my doctor appointments, but this morning she wasn't feeling very well so she decided to stay home. So about 10 minutes to 9:00 am I left out starting my drive with all the other morning drivers, and man there was more than I thought there would have been.

I get to the doctor's office, check in and begin reading a couple of magazines. One of which was called "Fort Worth, Texas - The City's Magazine" and the cover had these huge words "Top Docs 2008". Well of course I had to check to see if any of my doctor's were listed and if this Sleep Medicine doctor was listed. Much to my delight, all of them were listed and this Sleep Medicine doctor was the number one in the area....I was feeling pretty confident about what this sleep study was going to provide. Good, bad or indifferent, the results would be pretty definite one way or the other....in my mind anyway.

Finally I was called back to speak with the doctor, yes....I took that magazine with me into his office!! I walk into his office, which is something new for me; usually it is into an exam room when you have a follow up. Anyway, I walk in his office and look around this really beautifully decorated office. There were two chairs in front of his desk so I sat in the one on the left, while I was waiting for him to come join me in his office, I continued to look through the magazine. Why is it that you always have to wait 10 minutes or more for the doctor to join you, either in the exam room or his office?? UGH!!

When he came in he sat in the chair next to me instead of behind his desk, which I thought was so odd..comforting, concerning, but still odd. hahahaha. He started by asking how I liked doing the sleep study and if I had any questions about it before we get started on the details of it all. Of course I had to tell him how much I loved the mattress..hahaha, and how nice everyone was to me and I appreciated that!! Then he asked me to go over to the computer so we could look at the graph reading from all the electrodes that were placed all over my body, and take a look at the actual video. Talk about interesting!! To see yourself sleep is really something everyone should experience!! I really don't move around much, just my head and one arm or the other is all that really moved....which I knew I didn't move very much because it hurts, but I had no idea just how still I could be. He began to tell me that during the night when I was sleeping that I did go into REM sleep multiple times, and during the day with the naps every 2 hours that I did go to sleep 3 of those times and very quickly and 2 of those times I did go into REM sleep.
Ok, so now I bet you are asking the same question that I had....What does that all mean?

Well, it means that I do have signs of Narcalepsy which goes along with the diagnosis my other doctor gave me of Cataplexy. He went on to say that the reason for my unexpected and uncontrollable falling is due to Cataplexy. I felt really good to finally have a definite answer for all that has been happening to me for the past several months. I asked if I could have a copy of the video, graphs, and his findings. Yes, I also asked if I could have the magazine of the Top Docs, to which he said yes to all. YAY!!

I walked out of there with my head in the clouds and my eyes set on DSW Shoes again....but I didn't stop this time...hahahaha. I drove back to my mother's, but first I stopped at Subway and got foot long subs for my mom, dad and myself. I was excited to let my parents know that we now have an answer for which could be controlled.
But once my Neurologist heard of his diagnosis, she totally disagreed....greattttt, just great!!!!
Which means I still have to keep my appointment with UT Southwestern Medical Center on July 31st. I sure do hope they can come up with either the same diagnosis or something that can be controlled as well!!

I stayed at my parents house through the weekend, because I had another doctor's appointment on the following Monday. I let him know of the results from the sleep study and he was pleased with himself because he was the one who had that thought in the first place. So he prescribed Imipramine and I went merrily on my way back to my parents house for the night. But I didn't leave until Wednesday because I was exhausted and didn't want to rush to make it home before doing my radio show or leave afterwards and be driving in the dark, so I hung out with my parents one more night. =)

Wednesday morning I loaded up my suitcases, yes that is plural....I had been there for a couple weeks ya know.....anyway, got all my things packed up, got the dogs things packed up and ready to be loaded up in the car. My dad and I toted everything outside and sat things beside my car, I went back in the house for the last little bit of things - my purse, cell phone, keys and to give out hugs. Only one problem....I couldn't find my keys!! We all searched everywhere for them, and I do mean everywhere, but couldn't find them. After an hour of searching and bringing everything back in the house because it was way too hot for them to be left outside for long, I searched through my purse one more time....which made it the 9th or 10th time.....and what do ya know....I found my keys in the outside pocket of my purse....someplace I never put them!!
So....my dad and I toted everything back out and in the car, I got the dogs in and straped in, gave out my hugs and kisses, and away we went, making our way back home.

Three hours later we arrived home to find all my plants in the house from the greenhouse because they weren't tended to the way they needed to be....go figure....They all looked half dead or at least headed in that direction. But I was way too tired to fuss with it right then!! So I unloaded everything out of the car and dropped it all off in the closet and quickly changed my clothes for comfort and made my way into my nice, comfy bed!! WOW did it ever feel nice to be back in my own bed again!! I raised the feet up and lowered the head, put the tv on relaxing music and closed my eyes.....I drifted off to sleep so quick!!

Ever since, I have been either sleeping.....babysitting my two grand-daughters, tending to my plants, or sitting out on the boat dock relaxing and watching the cows!!
Well, until this week that is!! This week has started off with me putting key notes and a speech (of sorts) together for my speaking engagement for the Abilene Holistic Association on Thursday evening. I am really looking forward to it and hope open the eyes of those who are blind to the effects Chronic pain, be from RSD or something else, causes on the mind, body and spirit. If any of you have something you would like for me to add to my speech, please email it to me and I will be sure to include it .... if I don't already have it!!

So, I guess that pretty much gets you up to speed with all that has been going on with me this past month....and for those of you who are on my mailing list for my Newsletter, sorry to have you read the same thing twice....that is if you read my blog also....hahahahaa.

Again, I appreciate all your emails of well wishes.....they truly made me feel so much better!! It is so nice to have you all as friends!!

~~God Bless You All~~

Ideas to Empower YOU in Pain Survival !!

Remember to have fun—and seize the day!

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…

Cognitive/Mental Strategies

* 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.

Relationships

* 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!

Assertiveness

* 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.

Clinical Advice

* 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!!