Alli and I Face the Future and Emotions

So, Alli and I got out to our house on Prudence Island last Wednesday, the 17th. My good friend Cindy came with us for a MUCH needed reprieve from our day to day lives. We had just settled in for a long winter's nap.....oops, wrong story..... we had just settled ourselves out on the porch when I received a call from Erin. Erin Wylie is the wonderful trainer who matched Alli with me. It's incredible how they are able to match personalities. Granted, they know the dogs really well from the prison programs, but all the trainers know about clients is the information Kathy Foreman collects during the interview. Erin was calling to speak with me about the time frame for Alli going to her new "forever home". I had tentatively aimed for sometime in November as the target date to give Alli her new life. Erin feels that late September or early October would be a more prudent time. Her concerns are that if Alli's vision is already compromised, virtually blind at night, we may not be able to stay "safe". At the moment she's doing fine when she's working. It may be that she's on the lead, and knows that I'm on the other end. When she's "off duty, however, Alli has problems at night when she hears sounds and can't see where they're coming from. At times, she seems not to notice a hand coming "in" to pet her, occasionally even in the daylight. Also, it was very hard to see Alli stumble 2 or 3 times on the beach when there were larger rocks....right in front of her. I have to agree with Erin's projected time frame as Alli also stumbled going up the steps to the porch on the island. While verbally I'm able to "talk a good game", but coming to grips with the idea of Alli leaving me is another story. So far, I am handling it pretty well as long as I remember that this is what's best for Alli. I can't be selfish. If ever there was a time to want the best for "someone" it's now when that someone has given so much of themselves for me.

I've said several times in past posts that Alli is the gift that keeps on giving. Here she is having trouble seeing, starting to become fearful, and she's still alerting me to my migraines, helping me up from falls, being my shoulder to cry on and always being in the "now" for me. And today, not only am I having a tough summer due to the humidity but a couple of days ago my asthma stirred up and last night it became nearly unmanageable. So, I'm dealing with both my restrictive lung disease(my muscles are not strong enough for me to take an adequate breath)as well as the asthma. As always, Alli is right there. Nearly every minute of last night. I was awake all night coughing, and again today she was there by my side. When I got overwhelmed not being able to breathe she sensed this and moved closer. The last ferry left at 6 pm last night so we snuggled right through 'til morning. There are no stores(or restaurants for that matter) so even if I had gotten a returned call from Yale I'm not sure what I would have done. I think Alli knew that and didn't leave my side. **There's also likely to be a "stress" component in this current asthma episode. I've got so much on my mind, that I'm constantly feeling overwhelmed and working really hard to process it and hopefully not let Alli deal with more than she needs to. I think it must be so difficult for Alli, and service dogs in general, being able to sense so much that I wonder exactly what is going on in her head.

Some people don't understand the issue of Alli leaving sooner, or for that matter, how I am able to deal with it as well as I have up to this point. Once again, I have to think of it as a gift. But this time it's the gift I can give to Alli. Allowing Alli to get to know Elizabeth and Andy again, and gain confidence in her new home and surroundings all while she still sees relatively well to me is the priority here. Not to sound crass, but I will go on much like I have in the past. I know that my muscles will continue to weaken but as always I'll get through it. I've learned that things are only as bad as you give them power to be. Alli is the only one here who literally has something to lose. Affording her every opportunity to meet her future with success should be #1. Alli losing her vision is certain. Not being able to work....also a certainty. If those are definite, why not give her a definite positive outcome? As Kathy said about Alli going to Elizabeth, "it's the best possible outcome for a devastating diagnosis". I honestly feel very content and at peace about the decision. And, by Alli leaving sooner, I won't witness her difficulty as her vision fails. It also takes the decision out of my hands, negating the possibility of "hanging on" too long. I have seen too many people watch their pets health decline only because they can't bear to let them go.

Isn't it a greater sense of selflessness to give your pet the gift of love.......

"If you love something, let it go........."

Peace,
Wendy & Alli

Miracles and Memories

Well, my last post explained the situation in which Alli and I now find ourselves. She will go blind due to a genetic disorder sometime in the next 1-2 years. The kindest thing I can now do for her is probably the hardest decision I've ever had to make. Alli will be leaving me and going to a new home where she can enjoy her life without sight. After meeting with staff at NEADS on August 1st, following the decisive appointment at Tufts with the veterinary ophthalmologist, it was decided that NEADS would begin looking for a home for Alli. One of the ways I'm getting through this is by calling it her new "forever home". That way I can always remember that Alli and I had a wonderful home together and now we're moving onto the next "chapter" in our lives. I think that first week in August will go down as the single most painful time of my life.....and that's saying quite a bit! I was filled with much ambivalence as to how to approach this place in time, or even if I could.

I had posted a "Thank You" on Facebook for the prayers Alli and I received as we neared our August 1st appointment. I mentioned that unfortunately the news was not good but that the prayers we had received would get us through this next period of time when decisions about our future(s) would have to be made. I stated that if one read my blog this would all be explained and then went ahead and posted the details on my blog. In the meantime, my brother had called and during our conversation he asked several questions as to what it would entail to care for a blind dog. I had asked him if he was interested in adopting Alli and he told me at this point he was just inquiring. That evening, I sent off and e-mail to Kathy at NEADS with this information along with a brief intro to my brother and his family. The next day was spent with me going back and forth on the pros and cons of Alli going to my brother and his family. My biggest hurdle was knowing how hard it would be seeing Alli as she progressed to complete blindness. I think I would have driven myself crazy weighing this option, knowing it would be wonderful for Alli, and was I being selfish if I denied her that happiness just to spare myself the heartache. I was wondering if I could help wit this decision, when......it happened.....

YES, THERE ARE MIRACLES!

Kathy was just sitting down to answer my e-mail about my brother when the front desk "buzzed" her to let her know that Elizabeth, Alli's "Weekend Puppy Raiser", was on the phone. While she doesn't often go on Facebook, Elizabeth had read my posting and had gone to my blog only to find out the devastating news. She had immediately picked up the phone to call Kathy to let her know that if Alli needed a new home, she and her husband would feel "privileged" to offer her one. I know in the early days of my blog, I mentioned how much Alli loved Elizabeth, and vise versa. When I met Elizabeth at the "Meet and Greet"(held the Saturday of the weekend between the 2 weeks of training at NEADS) she had cried so hard when she saw Alli. Alli was so happy to see Elizabeth that it was really hard to keep her relatively(remember this is Alli that I'm speaking of.....!) calm during the visit. When Elizabeth left she was once again sobbing, you could see the love in her eyes, and Alli actually whined a bit and pulled on her leash to follow. If ever there was such a thing as fate, this has got to be a prime example...... It almost sounds trite when one says that "God has something else planned for them", but I think this may be the case. Another "silly" thing is that every morning after I feed Alli I go right into the shower. Almost w/out exception I sing 3 songs/hymns while in the shower. I start with "Amazing Grace", go into Harry Chapin's "Circle" and recently added the camp song "Alleluia" before finishing with another round of "Amazing Grace". I realized this morning, that Alli has provided me with very "amazing grace", her life seems to be coming full "circle", and I thank God every day "alleluia" for that grace! Particularly, in "Circle", the lines "It seems like I've been here before", and "I've found you a thousand times" and again with "As I find you here again, a thought runs through my mind, our love is like a circle, let's go round one more time" are the poignant lines. While Alli is an amazing service dog, I liken her to a wild pony.....I've always thought that she'd love to "run like the wind". She will, I imagine, be able to do something along those lines when she starts the next phase of her life.....with Elizabeth and Andy.

After learning of Elizabeth's offer, I was finally able to have the "good" cry I've been needing, and found that I had such a sense of "calm" afterward. I used to tell my children that if they need to make a difficult decision, and once made they felt that calm, that it was probably the right one. I know that when the time comes it will be more than difficult but knowing that Alli will have the quality of life that she deserves with wonderful loving owners will allow me to know that it's "the best possible outcome for the worst possible news". Surprisingly, another thing that's helping me to accept the inevitable is looking at the "11am Cute Puppy" pictures and captions on the NEADS blog. http://assistancedogs.wordpress.com
I had already followed the blog and adored the pics, but knowing that maybe one could be my new partner, Alli and I look at them together daily, allows me to begin to look forward again and not be caught up in what cannot be. I spoke with Elizabeth on the phone yesterday for quite a while, and when I got off the phone, I was surprised to hear myself say to my husband, "I feel pretty good right now"! We spoke of things she remembered from her days with Alli, some of Alli's behaviors(both good and some challenging!), commands, a possible time frame for the "move", things that have helped with her fears in the dark at this point, etc. I had such a good sense of how Elizabeth was looking forward to this and preparing. It almost seems like a type of "open adoption" of sorts. I will be able to see pics of Al, stay in touch via cell, e-mail, Facebook and honestly have no reservations regarding Alli's adoption by them. Elizabeth has had experience with disabled animals from horses to rabbits, as well as some time spent with autistic children. I don't believe there could be any better placement than this.

I hope that as the next few weeks to a few months play out I will have more regular postings as this process is important for many on many different levels. My one hope is that I can stay as focused and as positive as I am now without leaning on the selfish side. While receiving Alli was about me and regaining some lost independence, right now it HAS TO BE ABOUT ALLI. I will be able to move forward...one way or the other. Alli's greatest gift to me has been the knowledge that "come hell or high water" I will survive and get through this and there is more help out there for me in the form of another service dog. It may be a long wait, or a short one, but there will be another dog for me. I trust NEADS implicitly....I have to have faith....after all, look at the match they made when they put Alli and I together. So, now it's Alli's turn to be "served". Her best interests for the future must be at the forefront. And, I firmly believe that her future lies with Elizabeth and Andy...........

Hoping that everyone is able to find the PEACE in their lives,
Wendy and Alli

The Results Are In

Well, I've been putting this off since Monday, the 1st. In my last post I mentioned that Alli(pictured above w/ my good friend Bob Marshall doing what she loves!) had seen an ophthalmologist at Tufts for her annual "free" service dog eye exam. I selected Tufts because her "droopy" eyes have always run. I expected to be told that I needed to use drops or a cream to help. They have never seemed to bother her, I just thought it was worth finding out. In any case, instead I was told that the doc suspected PRA(progressive retinal atrophy), a genetic disorder that causes blindness in dogs within 2 1/2 - 3 years of diagnosis. We sent a blood sample to Opti-Gen., the testing facility and had a short lived sigh of relief when the result was negative. There is no "gray area", she didn't/doesn't have PRA. However, when checking with the lab, the specialist was told that a very small percentage of dogs who test negative for PRA have a similar disorder which mimics the symptoms as well as ending in blindness. The first symptom is night blindness, and gradually over time all vision is lost. There is no specific blood test or name for this other disorder as the gene has yet to be isolated and so can't be tested. After learning of this the ophthalmologist had us make an appointment to have an additional test done.

On Monday, August 1st, Alli had an "electroretinogram". In this test, contact like electrodes are placed on the eye itself. First measurements are taken in normal lighting. Then, the pupils are dilated and checked in a dark room. In the darkness, a series of light "flashes" are held in front of the eyes(kind of like strobes) and measurements are taken to see how the retina reacts to the flash. Following this initial darkroom test, there is a 5 minute interval before retesting in the same darkened conditions w/out the lights being turned on in between. If you think about it, when you are initially in a dark room, after a few minutes your eyes begin to become accustomed to the darkness and you start to be able to see shapes, and eventually make out objects in the room. That is the purpose of the 2nd and sometimes 3rd set of darkroom tests. The measurements should show an improvement after 5, then 10(if necessary)minutes. Alli had no change in her "waves" and measured little to no change in her reaction. This showed that she in unable to see in the dark, night blindness, at this point. Her "waves" in the lit room show a marked decrease in reaction and dilation showing that she is in the process of losing her vision completely. The doctor said that she would be completely blind in 1 1/2 - 2 yrs, but due to the current results it could be less than 1 year.

As I said earlier, I have been grieving since May 11th when I got the initial possible diagnosis. I have had lots of time to weigh the options before us. My very first gut reaction was that Alli should be allowed to "live out her days" with a family with plenty of land, experience caring for handicapped animals, and a lot of love to give my best friend. Then, after listening to others say that since Alli is such a great service dog and LOVES working, I selfishly thought that maybe with some work Alli would be able to continue doing what she enjoys doing. Ultimately, I realized that what is important is that Alli is placed with a family as mentioned above while she is still able to see, become accustomed to the "lay-of-the-land" and see and know who is loving her in her new "forever home".

Following our appointment at Tufts on Monday, one of my classmates from NEADS drove me the hour to Princeton to meet with staff there. As I have said before, the NEADS family is so very important once you are entrusted with your new partner. They take you in as a member of their family from the moment you're accepted to receive a dog. From that point on they are always available, whether by phone, e-mail or in person, to answer questions, help with new behaviors, help you keep your dog in check(.....not often necessary......unless you have a character like Alli!!!!!) or just to welcome you when you touch base. We discussed Alli's future, and it was decided that they would begin the process of finding a new home for her. In the meantime I will go back on the "list" for a new dog. Kathy, from NEADS, asked if a home was found for Alli sooner rather than later would I be able to let her go. I explained that I would almost rather that were the case since that would take the decision out of my hands and I wouldn't risk trying to hang on to her too long. She also asked if when another dog was found would I be ready to accept it. This, too, would be okay since I've been preparing myself since May for the inevitable separation from Alli. Knowing that the blindness is in terms of "when", and not "if" allows me to move on as I know that Alli will be placed with someone who can care for her better than I will be able to once she is blind.

Is this going to be easy? NO WAY!!!!!! But I know in the end it will all work out for the best, and that I will get through this as will Alli. Somehow the adage "what doesn't kill us makes us stronger" seems appropriate at this point. For surely, both Alli and I will need all our strength and then some to see through to the other side. Will the next dog be like Alli? I sure hope not! Obviously, I'm sure the dog will be an amazing service dog as all NEADS dogs are, but I honestly can't believe there's another dog w/ Alli's personality.......nor do I think there should be. Being aware that Alli was a "one-of-a-kind" is what will allow me to accept a new partner. Because, we will be partners. Just like Alli and I were. And, I'm sure that this next dog will be like the next chapter in my life, or actually a major part of the next chapter. At the risk of sounding corny, I hope my life story has many chapters, and if I look at it that way, I can look forward to what's to be written on the next page rather than try to write the past over and over. Alli, too, is merely turning the page to the next chapter. And, if I'm not mistaken, if hers was a "picture book" the pages would be filled with bright colors, warm smiles, and confetti everywhere. At least that's what my mind sees when I think of her.

A little crazy, I know, but it's my kind of crazy!

I will continue to post as our adventure unfolds.......

Thanks for your continued support.......

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