Hello my friends and faithful readers! It’s now late November and apparently this excerpt has been sitting still in my drafts since mid June. summer had finally hit Kansas this past week and boy has it been hot! Temperatures that should be more like July weather; so it will be interesting to see how it all unfolds.
Again, I cannot believe it’s been a handful of months and how I got so behind on my blogging. I have been fatigued a lot lately over the past month or so and just haven’t had the energy to sit and type at the computer for a couple hours. My mouse died and I had gotten a wireless one but for some reason, it didn’t work? So, I think it’s more of a in depth issue. Oh how I wish I had laptop or tablet so I can sit in bed on my down days and write… I also am provided wi fi at my residence and it can be rather touch and go.
So, to conclude my DC trip- I set my alarm I think at like 5am, ugh! I always allow myself at least an hour of time not knowing if I’ll have trouble doing my exchange. Luckily, I didn’t. I had gotten everything packed and myself ready to go, to be downstairs in the lobby of the hotel by 7:30 am. Now this, is quite early for me to even be not only awake, but dressed and ready to go somewhere. The concierge was busy running back and forth storing peoples’ luggage in a special room. I was equipped with my pink back back that carried my dialysis supplies, and a pair of flat heeled shoes. I was wearing heels and had a hunch I would not be wearing them for long. I stepped outside and got a blast of cold weather, slapping across my face and through my spring trench coat. I had no idea what the temperature was, it was not spring. Brrrr… oh I wish I had gloves, scarf, hat, and pants!
The executive director of DPC was out hailing cabs as apparently one of the vans did not show. I was kind of excited- my very first cab ride! As we got closer, I started to see all the beautiful white marbled buildings- it was so surreal. I had seen them in movies numerous times. Too bad it was so cold out!
Our first task was to get a large group photo in front of the Capital. We started gathering close together just to keep warm. I then, started jumping up and down while thinking of the humidity back home and last year’s summer… yeah, the “thinking warm thoughts” doesn’t really work too well.
After many many shots, we then dispersed into our small state groups to start our day of meeting with our state representatives. Little did I know how much walking was involved… I was the last one in my group dragging in my high heels with my back pack, huffing and puffing. I’m so glad I was so smart to think to bring flats! I was also thinking, oh I wish I were in a wheel chair! Once we arrived at the Senate building, we then had to wait in a long line to get in due to security. Approaching the guards and conveyer belt, I had to unpack my backpack, take off my jewelry and shoes, hand over my letter stating that I was carrying dialysis supplies to sustain my life. OH, one thing I forgot to mention, was I had borrowed a cooler from a DPC staff member to keep my bags of dianeal warm. I was grateful to have this, but should have asked to borrow one with wheels. Poor Tom had to carry the cooler with 4 bags of fluid. We got a lot of funny looks from people and the guards- they were hoping we had a six pack to provide them. As I blog about and share my life with others, I have to make it worth their while- make the security guard’s days interesting and try to challenge them, right? Of course! Always leave a lasting impression.:)
I put my flats on and shrunk a few inches, but indeed my feet thanked me. We then went to the cafeteria to regroup and come up with our game plan. So many serious people in black suits. Oh I was so grateful to be able to sit and rest an hour!
Onward to our first appt- so many long and narrow halls to walk down. How do these people do this every day? The interns? How do they find where they’re going?
We arrived and our group of about 7, walked into this tiny little office with a cooler and backpack. I’m sure they probably have seen stranger items… An intern took a back to what looked like a conference room, the chairs were on top of the table, so we pulled them down to sit. Then, we just dove right into why we we there. I think I may have shared that I brought a kidney with me in the cooler… just to get a reaction. Or, I may have said or perhaps someone else mentioned that we brought the beer for the meeting. No, I honestly shared and pulled out my visual aids to explain what I have to go through as a dialysis patient and how important it was to get this Comprehensive Immunosuppresive Drug Coverage Act passed. That was the main reason we were there- to get our state Representatives on board with this bill to get it passed in both the House and Senate by sharing our personal stories.
I skipped out the next appt as it didn’t pertain to my specific geographical region and I didn’t feel up to walking all the way across the Capital to the other side where the House building is located. I took advantage of the “free time” and did an exchange. I believe I may have mentioned in a previous blog that the DPC staff was extremely accomodating to my dialysis needs. They set me up with the Medical units in both the Senate and House buildings. I walked in and told the nurse who I was and why I was there. She then put me into their computer system and walked me back to the room. It was nice- I had a bed to lay down with the IV pole next to it, a sink to wash my hands, and privacy. I so wanted to take a nap! It was extremely wonderful to sit with my feet up and shoes off. I’m sorry I didn’t take pictures to post. Then again, there may have been some strict regulations.
We took turns in our group, by initiating our appointments. I had the privilege of leading our apt with our fine Congressman Kevin Yoder. I met with one of his aides and I found every staff person extremely friendly and helpful. They were patient and willing to listen. Also, to my surprise, this particular aide knew quite well what we as dialysis patients go through day to day as his own father dealt with being on dialysis. During midway through my “speech”, Congressman Yoder made an appearance even though he himself was in a meeting with someone. Due to the honor of getting to know him the past few years, has given me a “leg up” on getting time with him. And to me, it spoke volumes of his personal integrity, not to mention his genuine care for his constituents. I was blessed that he took 10 minutes to chat with us! He told us to let him know if we ever need anything, that he’s there and his staff is there. I have taken him up on his word since then and have been greatly taken care of in a very timely manner.
I was ready for this day to end due to the physical fatigue of all the walking! Needless to say, we had to go back to the hotel to check out and retrieve our baggage. I wore a green suit that day and had a bright coral trench coat, so I was rather easy to spot. I wanted to see if I could hail a taxi and by golly, I sure did! I felt like a New Yorker or Sarah Jessica Parker from Sex and the City! God provided a very nice taxi driver, who actually spoke English and allowed us to only give the cash we had on hand for our fare. I believe we were maybe a dollar or perhaps even $.50 short. I could not thank him enough for his kindness! During the ride, I shared why we were at the Capital and that it was World Kidney Day and I had my dialysis stuff with me. I think there are many caring folks in the world as long as you are completely honest with them; not expecting pity or a handout; just being real.
After leaving DC, I got to enjoy a couple days with my older brother and his family. This will be continued in a new blog…
Many many thanks from the bottom of my heart for your patience with me! And always, for your continued encouraging and loving support!
Carmen
