TIP

I'm adding the usual picture, this time a video, below because I have to apologize for all the , "Are you ready?", and "Good Boy!" comments first.  Tippy loves to play, loves the soccer ball, loves the tennis ball, but is so laid back that he likes a lot of encouragement.  He likes to know that he's doing a good job, that he's not doing anything wrong.  He takes his job very seriously, and his play just as much so.  This is also one of the last times that I stood up while playing with him....my hand was already broken....I decided soon after not to take any more chances!  Tippy normally plays harder and the balls, whether soccer or tennis, go farther when I'm not trying to brace with the crutch, kick or throw the ball, and hold the camera, all at the same time!  I guess that explains the broken hand...!  **(Oh, and ignore the "awesome" lawn and landscape, enough said)

Tomorrow we meet with a woman from the Essex Rotary.  They donated quite a bit to go toward Tippy.  She wants to get together so she can meet me and Tippy and learn a bit about "Service Dogs" and all they can do.  She'll also have a gentleman from the club to take some pictures.  The Rotary would like this done so they can submit it to the local papers and TV stations to see if anyone wants to "pick it up" for a story.  This publicity is a small price to pay for what the Rotary has done with their donation.  I have to remember to wash Tippy's "equipment" tonight so he'll look great for the pictures.  Who am I kidding?  He always looks great.  I know I said it with Alli, but it's like having my children young again.  I feel so proud when people take notice about the great job Tippy does and how handsome he is.  They especially take note about his shiny coat......salmon oil.  I know some people use fish oil and/or those fish oil gel tabs, and they seem to work great, too.  But, I used salmon oil for Alli before I knew that and loved the effect.  I get it at the pet store.  Labs are known for having dry skin, the reason I started the oil with Alli, and using the salmon oil seems to take care of any dry skin along with providing a gorgeous coat.  The other day someone made the comment that his coat was so shiny in the sun it had the look of a deep blue, like a seal.

I think I need to stop for today.  Tippy started out on the bed with me, with his chin resting on the edge of my laptop.  He then moved so that his whole head was on the keyboard and just his eyes were looking at me.  I tried scratching his belly with my foot as I often do while typing but apparently that doesn't cut it today because he's jumped off and is sitting by my bedside with his chin on my leg.....again with the puppy dog eyes looking up at me....  He definitely wins this time....I gladly cry "Uncle"!!!!

"PHEW.......!!"

Well, I started this post the day before Easter after our visit with the Easter Bunny. This picture shows the "ever curious, always problem solver", Tippy, looking for the Bunny's eggs. Once again, as with Santa on the Christmas train, the "character" phoned in his duty. Whatever happened to all the "Edmund Gwenns"(The 1947 version of "Miracle on 34th Street"/black&white.....it can't be beat!) Santas and Bunnies were always so animated! Now many of them sit and just bide their time! If I hadn't seen his lackluster performance with the children before Tip's turn, I would have thought he was just afraid of dogs.....or flat out doesn't like them. But the children would sit next to him, he didn't move or tip his head or even wave, the picture was taken and the children would be led away by their adoring parents. And, what makes it even worse, the least expensive package of pics was $22. What happened to being able to buy just the one 5x7 for $10? There wasn't even an option for a single. Enough ranting.

I got as far as uploading this picture (taken with my own camera!) and had to stop due to the pain in my hand. I broke it playing with Tippy on the day following my last post. I have to explain at the start that it wasn't his fault. When your trainer tells you to sit when playing with your dog because your balance is so bad.......SIT!!!!! This was the second time I've fallen while we exercised/played, and hopefully the last! This time, when I went to the dog park I decided to capitalize on the early spring and take Tippy down to the swimming area. At this point, no people swim, and there's no one to make sure the dogs don't use it. Because Tippy hasn't been with me for very long, I had his flat collar attached to a 50' lead. 20/20 hindsight is a B*%#H! Instead of just letting the lead lie along the sand, I had the brilliant idea to hold the end. I just didn't want to take a chance on him running, and the highway is just up a big hill from the beach. I went to throw the ball, began to lose my balance, and ended up throwing it too far. Tippy naturally went after it and I realized immediately that I needed to let go of the lead. Wouldn't you know, the lead "handle" got caught up on my thumb and my fate was sealed. As I was already off balance, down I went! The weird thing is that I fell onto my right side yet it's my left hand that's broken. It happened so fast, I guess I could have put my left hand back to brace for the fall or it just got caught under me....either way, I don't know. Later that night I vomited, then most of the next day as well. I guess I might have hit my head and got a mild concussion.....that explains why I had sand in my hair and I guess the left hand as well. When I fell, I tried to get up but couldn't. I called "Tippy, Tippy", but he had gotten the ball and was doing what we call the "Rabbit Run" around and around me with wild eyes....he was definitely "in the moment". I then decided to use the "Level II Recall", and said, in a very authoritative voice...."TIPPY, COME!!!" He turned on a dime and came right over to me, sat, scooched a bit closer and put his chin on my shoulder! I started to cry! I don't know if it was from the pain, or the fact that he remembered something I had been teaching him and used it at an appropriate time. I taught him to HUG!!!!! He stayed there until I said, "I love you.....good boy"! Then he stood in front of me and braced himself while I leaned on him to get up. It took awhile, and he didn't budge the whole time....GOD, I LOVE MY BOY!!!!!! The "kicker" is that one of the reasons I took Tippy to the beach was to celebrate his "half birthday"! He turned 18 mos on the 4th. My son's birthday is in January, so when he was young we celebrated his "1/2 birthday" in July. No cake or party, just a trip to the book store for his choice of a couple books.

The following Monday, the 9th, we went up to Middletown to see the new office for US Pain Foundation and meet with Paul (Gileno, President, Founder). I'm very excited to put in a day or two each week, when able, to work on issues, support groups, research. It really made this whole thing I've been working on seem so real. It's always been real, but I now realize that what I say does matter, and I have the ability to reach out to others and help them to see how they can help themselves. In essence, I've not only found my "voice" but am learning how I can use it to be a positive influence for those with chronic pain and illness. I'm also getting used to learning about the issues that effect our health care system, and testifying to help improve the lives of so many. NEVER would I have guessed that I would be doing this, let alone enjoying it. In June, US Pain has received a grant to bring the INvisible Project to St. Louis, MO, and Paul has asked me and fellow advocate and INvisible Project subject....and friend Ellen Smith to accompany him and speak before the group attending. Mark, and Ellen's husband Stu will of course make the trip with us as we are not able to make the trip w/out their assistance. Of course.....Tippy and Ellen's service dog Maggie will also be with us.

I know this is long, but it's been 2 weeks and I promised myself that I would post at least once a week. I've got a couple more topics to cover.....please bear with me......? On the 11th, (Ellen's birthday!) I actually got some wonderful news. Currently, my immune system is holding it's own!!! I actually don't need the IVIG at this point in time. My immunologist said that perhaps the new doctors I'm seeing in September, Neuro-Immunologists, may see the benefit of the IV, but at this point I will not receive it. The same IVIG that I was receiving is often used for persons with MS and other neuromuscular disorders. Not having it for the last year could explain why my balance and muscle strength have declined more than in previous years. Along with this topic is the interview I did with NBC 30, in Connecticut, pertaining to the bill which I gave testimony for that would restrict the out-of-pocket expense for Specialty Tiers. At the time I gave testimony and was interviewed I had not had my blood work, and was still fighting for my IVIG. I will continue to push forward for others who desperately need there Specialty Tier meds and cannot afford the increasing co-pays. The bill was "killed", so the interview was tabled. I'm not sure why, but the station decided to run the story this past Monday as part of their "Troubleshooters" segment. I had contacted my "media" person Jen, about the change in my status. We hashed it out a bit and decided that my immune system is a small part of my disorder and that since I was on it and remained infection free for the duration, I would still opt to have it if available and a physician agreed. Also, she felt that since it's possible that I reaped the benefits with regards to my neuromuscular disorder the story was still valid. Neither one of us was notified that the story was running, but everything is good!

Last, but not least, is the spaghetti dinner Tippy and I attended on the13th....a Friday no less! It was a bit ironic that Tip was there as it was a benefit dinner for an area cat shelter, Catales. We were told there might be cats there, but they would be in crates. I didn't see any cats, but the big black dog slept through pretty much the whole thing!

I have decided that Tippy is "Wise Beyond His Year(s)" and wanted to leave you with a picture of what I am blessed to see each and every day......

Peace,
Wendy www.neads.org

"......Like a Hamster on a Wheel........"

I really need to slow down....but it's so hard when I know what I'm doing can help so many....and the fact that I love it just keeps me going!

This is Tippy doing his Oscar Nominated performance of "Dead Dog"! Our dog park...or "Paw Park" as it's called....opened on Sunday. You can always walk down from the lot up above, but on April 1st the gate opens allowing one to drive down to the area. I can't walk far enough to make it when the gate's closed so I'm thrilled it's open! Today was our 3rd day. I still exercise Tip at home every day, but it's great for him to have the social experience of playing with other dogs. I'm sure you remember me referring to Alli as a "Pushy Broad", but Tippy is the complete opposite. When we get to the park and other dogs are already there, "yipping" and "play" growling to let Tippy know they were there first, he already begins to cower a bit. Then, he gets anxious to play and begins to get a bit hyper. I make him sit in the transitional area while I remove his Gentle Leader and vest. Sometimes it takes a minute or two to get him settled and watching me before I open the gate and say "Free Play"! Then, the fun begins! Tippy charges out of the gate, but as soon as the other dogs descend on him, he cowers, runs behind me, and watches for a chance at "freedom". When he spies his opening, he dashes out looking oh so confident....until the other dogs start barking or running, and Tippy turns on a dime and comes "running back to Mama"!! It's really quite comical. He kind of hits and runs. Dash out, dash in, dash out, dash in....you get the idea! I guess it's true, the bigger they are, the harder they fall!

We have been very busy, a good busy, but very busy. On March 22, I got an e-mail from Paul Gileno(US Pain) asking if I would attend a CHAF (CT Health Advocacy Forum) as a Rep. for US Pain on Wednesday the 28th. I said I'd be happy to, I'm one of those people who love attending meetings that help me understand different areas of our lives. So I put that on my calendar and planned for it. Then, on Monday the 26th, I received another e-mail from Paul late in the day, that he forwarded from one of our media group contacts asking if I would be available to testify once again in Providence. This time it was before a House committee on Insurance and Finance regarding coupon and/or discount programs as they relate to prescription drugs. The hearing was to take place the next day! Tiffany, from The Cullari Group, asked that if I could make it to the House on Tuesday, and Paul to the Senate on Wednesday she thought we'd have good coverage. She also sent a couple pages of "talking points" which included a chart and the key points to be included in my testimony. These always help. I can't possibly be aware of, or know the gist of, every bill coming up for discussion. Especially in another state. Needless to say, we went to Providence. I learned a lesson. I had printed up my testimony and was pleased that I had incorporated all the key "points" and included the chart with explanation. There were probably 6-7 opposed to the bill(US Pain, for one), and one in favor. The chairman, he looked like a cross between JFK and Sen. Blumenthal, decided to sandwich the Blue Cross gentlemen(of course the only one "for") between the opposed. When my turn came up.....right after the BC guy, I asked if I could remain seated as there was not a podium and it's difficult for me to stand for any length of time. The chairman said yes as long as I spoke loud enough as the hearing was being recorded. I chuckled and said that I've never been accused of speaking too quietly. I began my testimony. Several of the speakers before me had mentioned that the coupon/discount program helps those with meds attached to high co-pays. When I got to an appropriate point I mentioned that while I was not a Rhode Island resident, and my med did not "fit" the bill, I just wanted to point out to those present who may not be aware of the high cost of prescription medication that one of mine which I cannot afford carries a co-pay of $1,000/4 wks. Again, I mentioned that I was merely showing that there are indeed high costs associated with prescription medication. I then continued on with my written testimony and finished. The next to testify was called and began their testimony. Well, with the speed that the committee's "council" rose and came to speak with me you would have thought that I was wanted for a felony! While the testimony continued he asked me if there was a generic form of my med. I told him I wasn't sure but that I know there are other formulations but my doctor wanted me on this specific drug. He told me that if there was no generic it didn't apply to the bill. I reminded him that I had prefaced that when I made my comment, and also since I'm not a resident of RI it really was a moot point. He gave a heavy sigh and looked at me with slight disdain, then went to speak with the author of the bill, and then to the "gentleman" from BC. I thought the council was supposed to be neutral....right?!? It was certainly evident how he felt. So, for now on, I'll stick to the script, my script.

Have you ever needed to speak in front of a group, and your friends/colleagues tell you that they know you'll do a good job, or that they are sure you did do a good job? I've been told that many times. And, although I feel fairly confident about my experiences, I'm never really sure if it's factual, or are they saying this to be kind and not wanting to hurt my feelings. When the testimony for my bill concluded, Tippy and I rose and left the room with the others who had testified. A woman came up to me and asked if I would mind an unsolicited comment. I assumed, as always, that it was going to be something about Tippy. WRONG!! She told me that she just wanted to say that I had spoken so well with pertinent information. She said that she could tell that I was comfortable giving testimony and that always had a positive effect on committee members. WOW! I had noticed this woman when she entered the room shortly before the hearing began. I'm not sure if she is a lobbyist or a member of the legislature in RI, but she was greeted by most of the persons in the room and they all seemed pleased to chat with her. In any case, she appeared to be a staple at the capitol and she seemed to really understand the system. I suppose that it could just be wishful thinking on my part, but if so, I liken it to when Hermione thinks that Harry put a serum in Ron's drink to make him feel more confident. He didn't actually do it, but since Ron believed Harry did, Ron performed almost flawlessly. Like the "Self Fulfilling Prophecy". If I believe that what the woman said was true, I will act on that belief. Then at the CHAF meeting on Wednesday, I received more validation. I approached the Chairwoman, Sue, at the end of the meeting to request she send the minutes to me as well, she said that she had meant to thank me. When I inquired why, she said that she had been at the Capitol in Hartford when I gave testimony regarding the "Specialty Tier" issue. I heard her speak that day on a different bill, before me and thought she did a great job. She wanted to let me know that I had done a great job and felt that Sen. Crisco(Co-Chair of the committee) had responded positively. So, here again was a positive reaction. The next day, Paul forwarded another e-mail to me. This one was from Sue requesting my e-mail address from Paul. I think the reason that he forwarded it to me was a comment she ended her letter with. She wanted to let him know what a "fabulous" job I did presenting on "Specialty Tiers" in Hartford. Okay, I'm sure you're thinking that I'm "full" of myself. Actually, I'm not. My dad always said that we shouldn't pat ourselves on the back. He didn't think it was appropriate. I loved my dad deeply, but I do think that that is one reason I've never had much self-confidence, and my self-esteem leaves a bit to be desired. But I'm learning! It feels good that I am actually helping others while helping myself grow at the same time! I really enjoy doing this work with US Pain Foundation, and am constantly surprised that I am capable of doing it at all!

I guess I had a lot to get out......thanks for hanging in there!
Peace,
Wendy

***I have tried to adjust the time code on this blog, but nothing I try works. It says it's 12:0something, but it's really 6:36 pm on Tuesday the 3rd of April, 2012.