Prayers Please, aka "And the Eyes Have It!!"

So, the last 2 weeks have been a silent hell for me and Alli! Every year, a select group of veterinary ophthalmologists donate free eye exams for service dogs. Normally nothing is found and the dog's vision is cleared. I registered Alli thinking that everything was fine but maybe I'd get some advice on how to treat her droopy eyes that tend to run constantly. I truly did not expect to get any other diagnosis/prognosis. Alli has these huge, droopy eyes that just melt you when you look into them. Well the specialist did a whole battery of tests much like those my ophthalmologist does, but even more intense. She was quite quiet and had an extremely serious face the whole while. She repeated the tests and then asked her associate (also a veterinary ophthalmologist), to do the same. They conferred briefly and then informed me that although she hoped she was wrong she felt that Alli may have a genetic disorder which affects the eyes known as PRA, (Progressive Retinal Atrophy).

Well, I had started this the other day, after receiving an e-mail from "Opti-gen" telling me that Alli's test was "Normal/Clear". Meaning, she does not have the prcd form of PRA. That form is the only form of PRA in Labrador Retrievers. So, I was excited and had gone on to finish this post and was just about to hit "Publish Post" when..........you guessed it........I got a call from Dr. Federica Maggio, DVM(Board Certified in Veterinary Ophthalmology). I had forgotten to give her a call with the good news so she called the lab and spoke to one of the "scientists" that oversees the testing in the lab. He had not realized that Alli had a tentative diagnosis of PRA when the test was run. He had no way of knowing since there wasn't an area on the form for me to check it off. Also, combine that with the very definite markers of PRA which Alli has in her eyes and that she is an assistance dog and the individual from the lab had a very serious discussion with the doctor. Apparently there has been a very few.....I repeat, very few.....dogs that when tested for PRA with symptoms such as Alli's that test negative yet have a disorder very similar to PRA that follow the same path with the same outcome......blindness. The ironic thing is that some of these dogs have come from organizations helping the blind. Alli, too, was purchased from Guiding Eyes. They keep great records and screen their dogs for any known disorders but since they don't know what causes this type, it remains an unknown. The gene for this similar disease has yet to be identified and isolated so it's not something that can be tested. Dr. Maggio said she'd like me to get information on Alli's lineage for both her and the lab and then to make an appointment to see her. She would like to run another test which while it can't tell us what this other possible genetic disorder is, it can tell us if Alli is having problems with her retina(s). And, depending on those results I could find out if she is going to lose her sight.

How cruel to have a young, much loved partner go through this. Her face is so sweet and her eyes have so much emotion to offer that it's hard to look at her and not be reminded of what she's going through.

I think I am better able to handle this after spending time while waiting for the first results trying to decide what I would/could do for Alli and for our future. At first I just assumed that she would not be able to work and that the best thing, the kindest thing to do for her was to find a family with a lot of land and had experience adopting and caring for handicapped animals. I'm still not sure that wouldn't be the best idea. Then I started thinking that she could probably stay with me in her present role and I would just have to work really hard on training her to fetch when she can't see. Maybe scenting the inside of her pockets of her vest and backpack with vanilla so that she can find it that way. Sometimes I need to tap the ground where the object is and she finds it that way. This will certainly take a lot of thought and "soul searching".

Please include Alli in your prayers, she is so deserving...........
Peace

"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

Birthdays and Migraines w/ Alli as the Gift that Keeps On Giving!!

Well, today is Alli's 3rd birthday!!! We've come a long, long, way! While Alli remains one of the happiest dogs on earth, she's also learned when it's okay to "be a lab" and when it's not. I think the hardest thing for both Alli and I to learn has been that just because she loves everyone and everything, that doesn't mean she can constantly act on this belief! We have been working very hard these last few months to "iron out" some little habits of hers that are just not appropriate. One of these habits has been barking when she sees another dog or a person walking down our road. The occasional bark to alert is to be expected and is okay. But, Alli was doing it almost all of the time and since we live at the end of a road which leads into a cul-de-sac, it's only natural that everyone walks up toward our house then back down. I am thrilled to say that that behavior has all but stopped. And, when she did bark it wasn't an act of aggression, she just wanted to let others know that she was there and ready to play! Another troublesome habit was when Alli barked in the car whenever we had been out and pulled into our driveway. It probably doesn't sound that bad, but when you've been out for a relaxing drive and come home and all of a sudden there's a loud bark from the back seat! It's enough to scare the,...........well, you get the point! That, too, is no longer an issue! My biggest worry was that by settling Alli down for all of these corrections it would calm her down too much.....and I love her amazing personality. I think it's worth a few idiosyncrasies!

While all this has been going on, so too have some pretty amazing developments as far as Alli helping me!!! For some time Alli has been helping to calm me when I get my "severe a-typical" migraines. She would stand on the bed next to me and then lie along side me stretched out leaning her full weight on me. She stays that way, until I tell her "I'm okay". Well, in the fall, on several days she leaned against me in the morning when I went into the bathroom instead of lying on the bathmat. I realized that on those days I ended up with a migraine by late afternoon. I started to pay attention to the......phenomenon.........and it turned out that she correctly sensed the next 3 out of 4 migraines!! I had an appointment with my neurologist in early December and asked his opinion. I fully expected him to say that it wasn't possible for Alli to "predict" my migraines......but.......he said it was most definitely possible! They have always asked me if I notice the "aura" some people experience foretelling the event. I never have. The doctor said that after being together for a year, Alli is probably sensing this "aura". I have been told by several people that perhaps this "aura" can be sensed like a diabetic who's sugar has dropped (?)they give off a "fruity" aroma. Perhaps my "aura" gives off some perceivable, at least to the fine tuned lab's sense of smell, scent or something along that line. Needless to say, my doctor changed my med that I take when I think one is coming on(I was still getting 2-3 migraines a month which the neurologist felt was still too many), and I now take it when Alli "marks" the impending onset. I have only gotten one....possibly two......in the last six weeks, thanks to the signal Alli gives by leaning against me beginning in the morning when I first rise. I've said it before, and I'm sure I'll say it many more times.......Is there no limit to what my partner Alli can do for me and with me?

So, as I started with, today Alli is 3 yrs. old. I took her to PetSmart and let her pick 2 toys. She picks them by responding to the sound they make. The one in the picture above has 5 different "squeakers" scattered throughout the stuffed dog. Another one is kind of like a cow and has velcro at the bottom. A plastic water bottle gets inserted inside and when Alli bites on it, it "crinkles". When the bottle is too chewed up, you replace it with a fresh one.....they're empty, of course! She actually loves the crinckley one better, but I think I should pace her with it so she doesn't chew the cow apart.

Last, but not least, I am very fortunate to be involved with the US Pain Foundation. It was through this foundation that I became involved in the INvisible Project. Now, they are going to fly me, Alli and my husband to Texas to see a doctor who specializes in pain management. Hopefully I'll be able to go in April. It can't come too soon as my pain is never ending. And, not only is it from my muscles weakening and complaining but I also had surgery in January for a "SLAP Tear". I am just finishing my first month of occupational therapy. Up until now it has been passive then active range of motion. We are starting strengthening exercises and I was up all last night from the pain despite icing it after therapy and twice more before bed. Two of my NEADS classmates have taken the trip and have each had a positive experience. I hope to take my laptop with me to Texas so that I can chronicle my experiences, positive or otherwise.

Until next I post,
Peace,
Wendy and Alli

Alli, Snow, and Good Friends!

So, the snow just keeps on coming!!!! This was the first time in several years that I've been able to enjoy the beautiful white stuff! My balance is so bad that snow and I just don't get along. But, with about 22" on the ground, it actually seemed to support me better than using my cane!! Besides, I'm having surgery on my left shoulder tomorrow so I figured; "What have I got to lose?" With several months of OT ahead of me, I'm out of the picture as far as snow goes for the rest of this season. And, as my muscles continue to weaken, balance shows no improvement, and not sure if I'm going to have my knee repaired or when that would be.....I don't know if I'll get in the snow again. But, that won't stop me from absolutely loving it!!!!

Right now, my trainer at NEADS, Erin, is helping me nip a couple of negative behaviors in the bud as far as All is concerned. She has been barking, and it is steadily increasing. With the recovery time ahead, I wanted to at least get a handle on it since I will be having others help me walk her and play with her. I still need to be present, the verbal commands will come from me, and when others throw the ball/toy for her at play time, I'll be the one telling her what to do.

Barring any major complications, it appears that sometime around March Alli and I will be going to Texas to meet with a new doctor to get much needed help with my pain, and muscles. We'll be able to do this thanks to The INvisible Project which I was part of. My NEADS classmates, Ellen and Karin, have been to the South Texas Interventional Clinic and have made amazing strides. The doctor, Dr. Rhodes, invented a machine that appears to use electrical stimulation on the nerves to help with pain and muscle difficulties. Ellen and Karin knew that financially it was not a possibility, as we are still struggling to keep Em in school, and so they approached Paul Gileno, the Founder and President of US Pain Foundation to see if there was any possibility that the INvisible Project could help me get to Texas.

It always seems that just when you begin to lose faith in life and the human race, someone steps up to the plate and says......Don't give up just yet. I am continuously warmed by the good deeds of others, and for this reason I try to help where I can and find myself forgetting my troubles and pain while easing others'.

Talk to you soon,
Wendy!