"It's Alive!!!!!!!!!"

I realize that the picture is blurry, but between Karin and me, there are no steady hands!

I am in Corpus Christi, Texas, and have been since Monday afternoon. The US Pain Foundation is responsible for getting me here and enabling me to have the opportunity to get help for my chronic pain, muscle weakness and even migraine headaches.

The process uses an electrical stimulation machine. There are electrodes that are connected via adhesion to different points on your hands and feet much like the points used in acupuncture. Using differing levels of electrical intensity(Not strong enough to be felt) a base temperature, in the hands for the upper body and in the feet for the lower, rises slightly thereby "awakening" the nerve pathways allowing your body to send and receive messages.

Different "protocols" are used to help with various areas of the body that may be experiencing pain, weakness, allergies/asthma and other breathing issues to name a few. The protocols are the placement of 4 electrodes each for the left and the right sides of the body. For example, to help with breathing issues, there are protocols which direct you to put the 4 electrodes on specific points of the hands. The 2 hands may have different combinations to achieve the desired effects. While some effects may be felt soon after a "treatment", it can take some time to get the more lasting results.

The length of the "treatments" is 40 minutes each. That is, forty minutes for the upper and 40 minutes for the lower. During this time you are not to handle electrical devices including but not limited to; cell phones, tv remotes, laptops/computers, etc. The 2 treatments occur consecutively twice a day. Eventually a patient may move to once/day, twice/week, and also may add a specific protocol when needed for cold or flu, or other acute needs.

I am not normally one to try a non-traditional approach for my health needs. I did, this time, because I have seen first hand how the method works. Through the US Pain Foundation and the INvisible Project, and NEADS while receiving Alli, I have had the opportunity to meet some amazing individuals. One such person, is Nicole Hemmenway. She is the author of "No It's Not In My Head, the Journey of a Chronic Pain Survivor from Wheelchair to Marathon". Nicole suffers from CRSD(Complex Reflex Sympathetic Dystrophy) a debilitating illness which results is chronic widespread burning pain among other symptoms. She was literally incapacitated to the extent that she was in a wheelchair and unable to dress or care for herself. She is now an inspiration to all those suffering from RSD as well as everyone with chronic pain. Her success with "Doc" is what spurred us all on to do something for ourselves that holds the hint of promise. My friends, Karin and Ellen, came down to Texas in late Fall. While Ellen still struggles with breathing issues, she has had great success with her legs and now walks without braces. Her Ehlers Danlos Syndrome makes her experiences challenging but she continues with the protocols in hopes that will one day help. Karin experienced such promising results the week they came down, she actually returned in December and is here until the end of May. The treatments work best when there are no narcotics in your system to slow things down. Karin was on strong doses of pain med due to Fibromyalgia, complications as a result of Type 1 Diabetes, and injuries sustained in a serious auto accident years ago. She was walking with the help of a walker, and the use of a "Canadian Crutch" if there wasn't too much walking. She was also in constant severe pain. When Karin picked me up at the airport she was standing w/out any support, holding Lucky's leash and beaming ear to ear. When I got closer she looked happy, clear headed and to watch her move was just astounding! No one would know that just 5 months ago she struggled just to get through the day.........or maybe the hour w/out the constant pain.

So, in other words, I have to believe in what I've seen for myself......it can and does work. Maybe not for everyone, but so far for everyone I know who has gone before me. The picture shows me during the first 40 mins., or half, of my treatment. The electrodes are adhered to my feet and I just sit and relax....read a book or magazine and wait for the "beeps" letting me know that the lower portion of my body is done. Alli relaxes.....no, she SLEEPS.......so I must be fine because if I'm having any difficulties, she isn't able to settle down unless she's practically on top of me or I'm doing better and tell her, "I'm okay".

This morning, I awoke w/ very little congestion for the first time in months and I was able to get right up because my back wasn't quite as painful. After moving around, my back was back to it's old self but I also was "going" all day seeing the Gulf and some Pelicans. I remained, however, nearly congestion free for the entire day. Right now I'm about to do my evening treatment and my back is terrible and my breathing is rough. But the glimmer of success is enough for me to be "cautiously optimistic". You may not think that's much, but it's the most I've had in nearly 19 years.......so on I go!!!!!!

PEACE........

Texas and Dr. Rhodes, here we come!!!!

**(This picture is from my training w/ Alli in Nov. '09, I didn't get one of her on the plane!)
Well, here we are on our way to Corpus Christi to see Dr. Rhodes. He’s at the “South Texas Innovative Medicine” clinic. The US Pain Foundation is taking care of the whole trip. I’m sincerely hoping that he is able to help me. Of course…..Alli is with me. At the moment we are in the air and so far I haven’t cried. Geezzzzzzz I hate flying! I think just having Alli with me has been enough of a comfort to get me through the 2 flights today! That, and being to see Karin and Lucky when we land in CC. Although I’m writing this while in the air, I’m going to have to post it later on the blog. I just wanted to keep up the blog. Alli has rolled w/ the punches so far. She was amazing as always last night. Mark had me get a room at the Hampton Inn LaGuardia so I wouldn’t be totally anxious on the drive down. Alli always loves the hotels…….everyone is always wonderful to us, and she gets to sleep on those amazing beds. I prefer the Westin…..especially the one in Times Square…….but Alli just loves any trip to anywhere. She was rubbing against me this morning and leaning hard, and that’s how she tells me one of those terrible migraines/TIA’s is coming. Since she’s been letting me know, I have gone down to maybe one that I can’t catch in time every 2 mos. or so….and that’s down from 3-4/month. She really is amazing! As my muscle weakness progresses, she’s been rolling with the punches and stepping up each time I need her. She continues to help prevent my falls, and when I do go down, she’s always right where I need her to be to help me up, all w/out being told. I’m sure I would not be making this trip were it not for her. I guess Mark would have come w/ me……I think he’s feeling a bit left out on this…….but he doesn’t always see the doctor’s appointments the same way as I do, meaning I think he needs to let me process everything the doc says before just focusing in on the good. I grab the good stuff when I can, but I also have to deal with the negatives, too. So, they put Alli and I in the “bulkhead” seat, but she’s really encroaching on the foot space for the gentleman sitting next to me. Darn good thing we got the tickets changed to ones which are acceptable under the Americans with Disabilities Act. It’s really too bad that 1^st class is booked, because under the ADA, if there’s not adequate room for her(thereby me since she is an extension of me), they are required to bump us up to 1^st class. Alli is just huge…..no “ands, ifs, or buts”…..even NEADS is surprised by her growth! I know Ellen can fit “Maggie” under the seat in front of her, but there’s noooooo way Alli could do that. Right now she’s sound asleep with her head in the aisle. I hope they let her stay there for awhile! I’ll post again tomorrow after I’ve seen the doctor!

I really don't know how I can ever thank Paul Gileno and the US Pain Foundation for making this all possible........Now I just pray it helps!

Whew! Emotions and Alli..........

Well, April is proving to be an emotional stress filled month.

It actually started at the end of March. I was asked as an advocate for the US Pain Foundation to go to the Legislative Office Building to meet with my Rep. regarding HB 1083
on March 31st. This bill will prohibit insurance companies from requiring a patient to "fail first" at alternative prescriptions before eventually allowing the original Rx from the physician to be filled. This practice, "Step Therapy"(also known as "Fail First") is meant to help keep costs down. It does, however, cause chronic pain sufferers to endure continued and in some cases additional pain as they fail at ineffective pain medication. These "first" meds often have undesirable side effects as well. My meeting with Rep. Phil Miller went extremely well as Rep. Miller was very receptive to the information and the meeting was like a visit with a friend. **I have actually known Phil for years since he was the director of our local nature center and brought "creatures" to our preschool classes and we also took our children to the center for a walk on the grounds. He's extremely approachable. We also broached the subject of Medicinal Marijuana........it has made it through committee.......hope the momentum continues! He, too, has a Lab and really enjoyed talking about her and Alli. Alli really has the ability to relax the tenure of the room no matter where we are or what is going on.

Next up......an interview with our local CBS affiliate, WFSB Ch 3.(CT) For the interview I was asked about my illness and how the bill would effect me if passed. Early on, I was forced to try several pain meds that the insurance company insisted on before the prescription from my doc was ultimately filled. Because my breathing is greatly affected due to the weakness of my proximal muscles, primarily my diaphragmatic muscle, any narcotic tends to depress my lung function. For this reason I learned to not ask for meds for pain. So now, when I must take something for pain it usually has to be very strong as I have a relatively high tolerance for pain from pushing the pain aside and suffering in silence. The passage of this bill would mean being able to take the proper med at the onset of additional pain. It would mean that thousands of chronic pain sufferers in CT could get the help they need from the doctor who knows them best and not from a company who knows them as a policy number. And, as Connecticut is known as the insurance capitol of the world, passing HB 1083 here could serve as a model for other states
and hopefully pave the was to acceptance across the country. Although the "story" was not about service dogs, Alli was featured sitting by me, walking along close beside me, opening a door and helping me up from a sitting position. We also spoke about the comfort she provides, the emotional connection and how these help to ease my pain just by being there for me. The really neat thing is that I absolutely loved doing the interview and speaking with Rep. Miller. The gal from the media group that put it together said that there might be more opportunity to do the same thing. I've also been asked to do an OPED piece. It feels very fulfilling to know that I may possibly be helping others by putting myself out there!

Next up: my parents 56th anniversary would have been on April 9th. We lost my dad in June of '04 (12 days shy of his 86th birthday!), and my mom in April of '07 (2 days before my birthday). Each year Mark and I provide the altar flowers at our church on the Sunday closest to the 9th. This year it was just this past Sunday, the 10th, and our local florist did an amazing job. My mother's favorite flower was the yellow rose, and my father brought her a bouquet of mums every Thursday on his way home from work. Don't ask "why Thursday", I have no idea why! So I always ask for an arrangement with these 2 flowers as the focal point and then trust them to work their magic. What you can't see in this picture is that the Connecticut River is about 50 feet beyond the grave stone. It's quite peaceful since as you stand in front looking at the stone and the river quietly flows just beyond. I don't go to cemeteries as a rule, and other than at their services I have only been to my parent's graveside 3 maybe 4 times until about a month ago. For some reason, having Alli with me makes it easier and I have actually spoken to my parents and introduced her to them. I know they would be comforted knowing I have her as my illness progresses.

I have several doctor's visits in the next 2 weeks, my least favorite being my neurologist on Friday at Yale. He's very nice, well respected by his colleagues, has an excellent reputation, but ............it has been over 18 1/2 years and going once a year and hearing that there are still no answers is really quite depressing. I almost always cry after I leave the office but last year was not so bad with Alli by my side so I'm hoping I feel the same on Friday.

On April 25th, the day after Easter, the US Pain Foundation is actually flying Alli and me to Texas to meet a new doctor who has had great success helping those with chronic pain. I am so excited! Two of my classmates from NEADS, Ellen and Karin, have seen Dr. Rhodes and are doing well. Karin has been in Texas since the week before Christmas. She lives in Mass., but since she was on a lot of opiates she had to be "weaned" off them before the treatment could really be undertaken. She will be there when I am and will pick me up at the airport and drive me to my appointments during the week. She can plan her appts. for the same time and we'll be able to spend time together and Alli and Lucky will be able to exercise together. The only problem with this is that I don't like flying. Alli flew with her "weekend puppy raiser" before she came to me so she should do fine. The Foundation informed the airline that I travel with a service dog and requested a "bulkhead" seat. Ellen was able to have Maggie in front of her seat as she is smaller than Alli. Alli would never fit there.........she is really one big girl! We were told that if the airline can't accommodate us w/ a bulkhead seat they will have to bump us to first class! I've got my fingers crossed!!!!!

This month seems to be flying by........I'm just looking forward to Texas and some relief!
Talk to you all soon,
Peace,
Wendy

Pain, Politics and Patience.........

I don't have any awesome pictures this time, but, this post is more along the lines of a "political stand".

Paul Gileno, President/Founder US Pain Foundation, put me in touch with two individuals who arranged for me to meet with our Representative, Phil Miller to discuss with him the ramifications of "Step Therapy(also known as "Fail First") in order to help the passage of HB 1083 in Connecticut. HB 1083 is a bill which when passed will prohibit insurance companies from following the practice of "Step Therapy(Fail First)". In Step Therapy, an insurance company can require that a patient try and fail at one or more prescriptions before being allowed to finally take the prescription the doctor originally recommended. This practice is done so that the insurance companies can ultimately save money...... By doing this, people with pain are forced to try pain meds which don't work as well as the originally prescribed med. These meds often times have undesirable side effects as well as putting the patient at risk for further and increased pain and/or complications. While trying the prescriptions the insurance company approves of, the patient often experiences a worsening of symptoms which are more difficult to get under control when the patient is finally able to take the original prescription. The patients doctor knows their patient and what is best for any given condition. The insurance companies should not be allowed to take the doctors' place in prescribing necessary and beneficial treatment/medications. Every individual has a different story even when having similar illnesses. While everyone needs to be their own advocate when dealing with their health, the doctor is also an advocate when prescribing the medication they feel is appropriate for their patient.
The bottom line is that Step Therapy policies:
1. can result in increased health care costs.
2. contribute to the administrative burden in medical offices
3. often require patients to endure monetary, physical and psychological distress
4. may lead to the accumulation of unused medicines in home medicine cabinets

**** "Step therapy policies override a treatment decision between a health care provider and a patient. Even when a health care provider thinks the treatment may not work, these policies can unnecessarily force patients to: pay cost-sharing for the first steps of therapy and for additional medical visits; suffer physically because effective treatment is delayed; and, tolerate side effects from inadequate medicines."



If you're a Connecticut resident, I urge you to write and/or call your Representative or Senator and ask them to support "HB 1083" to put an end to unnecessary insurance practices.

**** From a letter written by Paul Gileno, President US Pain Foundation to
CT State Representatives