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
No comments:
Post a Comment