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Stopped journaling, which was silly just to save my sanity, arms, hands & whole body sitting on the computer. Why? To focus on the positives of my health and not focusing on the negatives, the pain it brings, of the can’t do’s.
2 weeks past due honoring Botox Denerviation request for the musculoskeletal injections to relieve pain. Refusal of a brachiasl plexus block, Transmagnetic Stimulation & trigger injections of steroids & local anesthetic for ulnar nerve pain is the latest denial. The insurance keeps just a tad up on information which is not relevant to Thoracic Outlet Syndrome & comprising conditions related to. Only communicating the reason why not, stating I have right right side TOS only, & the information wasn’t clear enough from the treating physician. A document saying they tried calling my physician several times being left on hold 3 minutes, then 2 minutes? When have you ever been left on hold for more than 2 minutes expecting someone to answer after 3 minutes or less?
I spend my mornings waking up from sleepless nights due to the discomfort & pain. There is just no comfort. Once getting up I roll out of bed, lay on the floor on the foam roller to align the spinal column. It takes off the cervical pressure that press on my circulatory, musculoskeletal & neurovascular systems. The Edgelow Diaphragmatic breathing & Feldenkrais techniques are used to relax those systems. It also helps calm the constant occipital headaches, eye & ear pain, cervical tightness, arm throbbing, hands tingling, ulnar nerve elbow pain, right leg & foot tightness. The right foot & toe numbness & tingling never goes away. My right leg droops, as my right shoulder. By then its 11am. I take my meds, drink tons of water, get on the stationary bike to create some blood flow. But, if I go too long for that particular day or too much the swelling increases & so does the pain. I cannot eat until an hour after the meds so its probably 1 or 2pm before I am hungry at all. I have become a vegetarian to get healthier natural foods in me. Recently adding a little meat for protein.
“WC Claims Management Service” “The WC Claims Management Service company for my employer has an extremely shocking, saddening & unpleasant response period to approve my doctors requests & medical care. Recommended by my specialized pain management Neurologist’s requests & medical care. I have pages of denials, delays journal’d. How do adjusters not fall under legally scrutiny denying patients medical care? No education or medical practical management under a ghost-like medical shield disapproving medical necessity’s giving out misinformation to abstract care. And here you give up our right as an employee not to sue my employer once I stepped foot in the workers compensation doctors office 10 ½ years ago. Who knew? You give up a right and you receive little to no compensation for justified medical care. That’s why we are $60K in debt paying for just the basic needs. I would have been back to work if not for the delays & denials of the insurance company. I would have my career, I would have my happiness working, and I would have my $500k in wages. Now the damage of TOS, right ulnar compression, cervical dystonia, & other diagnosis are imposing on happiness.
Patients loose faith in the medical profession as the under written insurance company’s & attorneys spends hundreds of thousands of dollars on one, yes 1 patient referred to their own paid medical examiner to deny the truth, refuse acknowledgement without education in existing chronic trauma. Why is this legal? Patients give up; patients die waiting for medical treatment. How does the cryptic legal system live with themselves? Is this how they or their families deserve to be treated when an injury succumbs their lives? Or are they all exempt like congress, which we Americans have paid into all these years for their salaries, wealth & abuse? As the years roll along without medical care other physical conditions come into play. The existence of numerous diagnoses arises adding additional medical care needed, which is denied. This is unacceptable to the established workers compensation rules and expectations of a person who has worked and worked diligently since the age of 17.
Finally, had my appeal hearing with SSDI. Such an incredible amount of work had to be done for the attorney. Master P stepped in and pulled several all nighters for me compiling & creating new documents. And here we thought I was so organized, LOL. Attorney just wanted it done HIS way. Thats ok, thats what we pay him for.
I contacted a few TOS patients who had already gone through this years ago. They were right there for me. What would we all do without our support system(s) & good friends we have made? But O, O, O how I wish I could still work, still do my job & careers after all these years.
I got dressed the best I could in my normal wear of pull on (no zippers or buttoning) yoga pants, a cami, a wrap & a hat. I felt positive as all I could do is tell the truth. My attorney has me scared shitless, oops should I say that?
The court reporter had me remove my cap which absolutely embarrassed me due to my hair unkept/washed, no style. Walked in to small room the size of a bedroom with an aura of calm & peace. There was the court reporter, a very nice looking & dapper judge welcoming me at his raised desk, a large computer screen & smiling, a physician with a legal size piece of paper with scribbles on it & a vocational coordinator with his set up of a computer, manuals & paperwork on another table, myself & my attorney at another table.
After going on 11 years I was wanting to spill out my guts. Not in an SSDI hearing. You speak when spoken to, be yourself , polite as always & truthful. I was in and out in 20 minutes. The judge had done his homework, asked all the appropriate questions & more. He referred to the physician which told the court I could work, lift , crawl & carry up to 20-40lbs 6 hours a day. As I was answering the judge’s question the physician’s cell phone rang. Yep.. & told the judge he had to take it it was an emergency as I was answering a question. My jaw dropped as the judge & I looked at each other. The 2 times I have been in court (Retirement Disability & now SSDI) there has been drama on the other end. Makes for a laugh & experience to say the least.
The vocational coordinator was pleasant & extremely professional. We were in and out in 20 minutes time. My attorney & husband prepped for the worse case scenario & nothing, nothing was used. Now it takes up to 90 days to receive a reply & if the judge for some ODD reason or the attorney general’s office decides to appeal the judge’s decision my attorney will go all the way to the superior court by my side.
So, what I am trying to pass onto all of you who have been disabled by this dreadful neurological condition. Get a good attorney & stand up for your rights as an American citizen who deserves the medical care & help we need. Its well worth the time, effort, pain, flares, suffering & headaches. Its not over till the fat lady sings. I’ll keep you updated. And if you ever need someone to hold your hand, walk you thru the procedure & expectations I’m her 24/7 for you. All my experience is to help YOU, just paying it forward.
*Check out our list of TOS educated professionals. Many more going up as they receive their certifications. And if you live in Southern California we have put together a list of FREE services for you & yours. Just contact Master P and he will hook you up. Our goal is to bring you Thoracic Outlet Syndrome HOPE, a smile, a positive day & put that pain & life crises on the back burner for a day meeting with one of our professionals. All brought to you by THORACIC OUTLET SYNDROME SOCIETY ~ TOSS. So, today I’m TOSSing the ball to you & make that first move!
The list of complimentary care professional specialist can now be seen on the TOSS web site. These are professionals who have attended the TOSS training and they are aware of what TOS is all about and they have specific protocol for treating TOS patients. TOS Patients are always looking for help and these are people who will help you “feel better now.”
Complimentary care Professional Providers have donated services to the Thoracic Outlet Syndrome Society (TOSS) for the use of TOS Patients.(RSI and Chronic Pain Patients, as well).
These services are available to you FREE. All you need to do is set up an appointment with a provider in you area. These services are available all over Southern California and I emplore you to take advanage of them!
Would you like to de-stress! A free massage session? A free acupuncture session to relieve pain? A free permanent makeup session so you do not need to do your make up each day? Learn to move better and relieve pain?: Use guided imagery to improve your daily tasks? Learn self hypnosis to diminish pain?ALL OF THESE PROVIDERS KNOW WHAT T.O.S. IS ABOUT AND HAVE BEEN CERTIFIED BY TOSS AS PROVIDERS OF SERVICES FOR T.O.S. PATIENTS.
Is there a catch? Your only obligation is to tell TOSS if it helped you feel better so we may share the information. You may do this anonymously, if you choose.
All these services are available for FREE.
Call and we will help you schedule a free session. We want you to feel better now! and this will help you!
Just call Cyndy or Phil at 714-524-7862 or 714-928-1561
The difficult part of having a chronic illness or disability is that you have to fight to get adequate treatment. You fight Workman’s Comp or you fight an insurance company or your fight the condition. Thoracic Outlet Syndrome (TOS) is not well known by a lot of doctors out side of specialists. The really good doctors, see the need for the education of claims adjusters, attorneys and most doctors who do not really understand what TOS is all about. The important point is that TOSS is dedicated to education of all that are connected to TOS patients. I will speak to any all groups about TOS, what it is and how it should be treated, based on published medical guidelines.
I have many hours of video on the subject and will be producing training sessions for all to view here. If you have suggestions or questions, we are here to answer them. Please contact us.
Phil La Puma
The complimentary care providers that participated in our TOSS Seminar have volunteered their services to help TOSS research the value of their services to TOS, RSI and Chronic Pain patients. We are looking for those of you in Southern California who are willing to participate in this research. You will be given a free session of one of these services. Your only obligation is to answer questions before and after the service as to the benefit of the service to you. We will then publish the results on our web site so that others may see the benefits of these service.
The types of services that will be studied are massage therapy, acupuncture, hypnosis for pain management and several other that are available.
If you are interested in these free services, and are willing to participate in our research, please contact me at phillapuma@aol.com with you questions.
Phil La Puma, President and Director TOSS
Happy Holidays, Merry Christmas and a Happy New Year from all of us at the Thoracic Outlet Syndrome Society. During this holiday season, TOS, RSI, Chronic Pain patients must make choices. For all of us, the holidays are stressful, because we have so many obligations, decorate your home, purchase gifts, wrap, prepare meals, travel and attend family gatherings . All of these activities create choices for the TOS patient living with pain.
When living with chronic pain, everyday life activities are difficult, but when adding the holiday activities they become even more so. Add to the stress the difficult economic times, and the choices become what to do and what not to do at all.
For example, Cyndy and I decided not to put up our traditional large Christmas tree. We put up two small artificial trees with built in lights (no stringing needed) and very few decorations. We have decided to only get gifts for the grand children. (Less shopping). The tradition in our home was to have Christmas eve and a gift exchange for the whole family. No longer at our home, we will go to our youngest daughter’s for Christmas eve and to our oldest son’s for Christmas day celebration. My wife Cyndy enlists me to wrap, to be her assistant chef to cut, lift and “gofer” what she needs so that she can still feel she is creating and contributing.
She commented yesterday that Christmas is so “boring” this year. Cyndy , “the entertainer” must do more watching than her traditional “doing and creating’ that used to make the holidays fun for her. Choices are difficult at times. She may choose to attempt something that in the past has always been easy and fun, but as she gets into it she realizes that it is more difficult now and her pain flairs and she knows that it was a bad choice for her. But once started, she will tough it out and finish, because that is her nature. So then another task becomes more difficult or she simply must stop doing anything and frets about what is not getting done. The result is pain and stress, pain for Cyndy and stress for both of us, patient and caregiver.
The important theme here is to make better choices. List the things that you need to get done and figure out what you can do and what you need help with and who do you have who will help. In making choices, figure the easiest way to get something done.
Do the easiest items first. When you get the easiest items done first, this gives you a sense of accomplishment right away. This works for the caregiver as well as the patient.
For example, if you make a list of five items to get done, estimate the amount of time and effort that each will take and do them in the order of the shortest to the longest. If items 1, 2, 3 take 10 minutes or less and item 4 takes 30 minutes and item 5 takes and hour and 30 minutes, you will have 3 out of 5 items done in the first ½ hour. If you start with item 5 you will work for an hour an still have nothing completed. By doing the shortest first in an hour you will have 4 items crossed off your list. This will give you a good feeling. You then can choose the best way to finish the last item and know if you still have the energy to take item 5 on.
I use this technique all the time on the “Honey do lists” that Cyndy gives me to help her get done what she feels is important around the house.
Understand this important fact about a woman who is the patient, she has a tradition of “nesting.” Her home being clean and neat is where she releases her stress. That is why working women will work all day on the job and then come home and work around their home continuously. They are working to release the stress of the day.
On the other hand, we males are problem solvers. Give us a problem and let us solve it. That is what makes males feel good. Males release stress by zoning out watching sports, the Lakers, the Chargers, the Kings or the Ducks, etc.
The female cannot understand why we want to sit around and watch TV when there is so many things to be done around the house. She will invariably ask that question when the sport the male is watching is at its critical moment. “Two minutes left in the game and Manning is driving his team down for the winning score to save an undefeated season,” and she will say, “Isn’t there something better you can do than watch TV all night?”
Ask the question differently girls, as Cyndy does, ”When there is a break in the game would you fold the wash and take out the trash.?” It is very hard to refuse this request. . .
By understanding the dynamic between male and female, patient and caregiver, making good choices and working together, you will have a much happier Holliday Season!
FEEL BETTER NOW!
Phil La Puma Director, Thoracic Outlet Syndrome Society
www.phillapuma.com
To see the original post go to http://judywesterfieldfibromyalgia.blogspot.com
Judy Westerfield M.A., MFT, CCH has been a Marrriage and Family Therapist, Clinical Hypnotherapist and Interactive Guided Imagery Therapist in Orange County, California since 1986. Diagnosed with fibromyalgia in 1996, she personally and professionally , knows the profound affect chronic conditions have on the mind, body, soul and relationships. TOSS is proud to have her as a TOSS Certified Instructor. The National Fobromyalgia Association honored her as one of 35 people in the United States in 2005 and 2006 as a “leader Against Pain” for her work with people with life altering conditions. Below is her post. Reach her at www.HypnosistotheMax.com
“I just attended a two day Specialist Certification for TOS. What’s TOS?! Thoracic Outlet Syndrome. That’s a mouthful. Well, actually it’s a neck, shoulder and armFUL. Full of pain. It can result from repetitive motion – like spending too many hours at computor keyboard or pitching baseballs, swinging golfballs, accidents, stress, and injury.
What really blew me away was the realization that this is exactly how my fibromyalgia started. I had excruciating arm, neck and face pain. It wasn’t from repetitive movement, mine was from repetitive STRESS. During the training I learned from Art Ando, a physical therapist,that if I had had physical therapy treatment it might have stopped the progression of my fibro symptoms. Ouch – I don’t know what hurts more – my fibro pain or the knowledge there might have been treatment that I never knew about.
If you have pain in your upper torso, the neck, shoulders, arms, http://www.andoaston.com/ is a good resource for physical therapy.. And you can check out the TOSS (Thoracic Outlet Syndrome Society) website for more information and resources.
www.TOSSociety.org
PS. Thank you to Phil La Puma and Rhona Jordan for putting together the training and to Cyndy La Puma for turning her TOS pain into help for others.”
Thank you Judy!
Phil La Puma
Chronic pain , thoracic outlet syndrome, repetitive strain injury, etc. leave you feeling out of control. As a caretaker for my TOS afflicted wife, many times I feel out of control as well. What is it about life changing afflictions that make you feel lost?
First of all, your life priorities must change. When you were well, you always chose what you did and when you wanted to do it. Now your actions are limited to deciding what you can do, and what are the consequences of doing it.
What happens is that as patients and caretakers we grieve for our old lifestyle, our ability to be who we have always been. But now we have a new story – pain and caretaking.
My goal as President of the TOSS charity, is to provide T.O.S. and chronic pain patients with the knowledge and ability to “FEEL BETTER NOW!”
TOSS will help you find services that will compliment your medical treatment and enchance your ability to take back control of your life.
TOSS pledges to be professional in its effort to inform and assist you.
TOSS is building this web site and blog. As it grows you will want to follow our articles and research. Your participation will have direct value to you and taking back control of your life.
Join our newsletter group by signing up above.
MOST IMPORTANT: IF YOU ARE IN SOUTHERN CALIFORNIA AND WOULD LIKE TO PARTICIPATE IN OUR FREE COMPLIMENTARY CARE RESEARCH. PLEASE E-MAIL ME AT phillapuma@aol.com
Phil La Puma
President,
Thoracic Outlet Syndrome Society
Saturday and Sunday November 7 and 8 TOSS had its first Professional Services Certification Class. The purpose was to teach complimentary care providers about Thoracic Outlet Syndrome and certify them as a TOSS Professional Provider. We educated physical therapists, massage therapists, acupuncturists, nutritionists and hypnotherapists about T.O.S. and how their services may help the actual T.O.S., repetitive strain and chronic pain patients.
The results were outstanding. Thirty seven providers are now certified byTOSsociety and will soon appear on the TOSS web site. You will see professionals who understands your issues. They are all excited to have the opportunity to help TOSS members.
In addition, many Professional Providers have pledged hours of their services to provide T.O.S. patients by TOSS. If you are interested in participating in the TOSS Professional Providers free services program, please sign up for the newsletter and send us an e-mail about you and your story so we may bring these donated services to deserving T.O.S. patients! Services are good for T.O.S. and chronic pain sufferers.
THE TOSS PLEDGE IS “FEEL GOOD NOW!”
With this pledge we are compiling those stories you have about what makes you “feel good now”- your successes.
Please let us know about your successes.
“Health and healing is within you!”
Phil La Puma, President & Director TOSS
phillapuma@aol.com
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