Quality Care?

I was scheduled to begin my pelvic floor therapy this week, an appointment which I have been anticipated with dread that stems from an impending sense of humiliation and pain. I was encouraged to have somebody drive me to the first appointment, so Scott secured the day off work. Everything was ready and while I wasn't looking forward to the appointment, I was anxious to get it over.

As the appointment day approached, I kept reminding myself that anticipated pain and humiliation was probably stronger in my mind than in reality. Just as I was psyched up and emotionally ready to conquer the therapy, the rug was pulled out from under me. Hours before the appointment, the therapy office called and cancelled.

On one hand I felt like I had received a stay of execution. At the same time, I was frustrated, disappointed and angry. I had invested so mental energy preparing for the appointment and I felt emotionally strong and ready. Scott had taken a day off work to support me, which could not be undone. While I knew that it wasn't my fault, I felt guilty that he had burned a precious personal day for no reason. 

My interactions with the medical community surround this organ prolapse has been exasperating at best. Between cancelled appointments, unanswered messages and examinations void of any compassion, I am experiencing considerable concerns about the quality of my medical care.

Disabled or Amputee?

Today is International Day of People with Disabilities. Apparently it is a UN sanctioned designation to increase awareness about the estimated one billion people around the world living with a disability. In researching this holiday, I learned that 15% of the world's population is disabled, making us the largest minority group.

I learned about this holiday through a friend, who sent me an email wishing me a happy International Day of People with Disabilities Day. To be honest, I was initially taken aback by being included under the disability umbrella. Although I have no problem identifying as an amputee, I don't consider myself to be disabled. I always considered my inclusion under the disability label to be a technicality rather than a reality.

The only times I feel disabled are when I am experiencing socket issues or limb pain. Having to modify my activities because of my amputation both annoys and frustrates me. I resent having to accommodate because of my limb loss, and during those times I identify most as disabled.

When my prosthetic is fitting correctly and my limb is healthy, I feel completely able-bodied. My prosthetic allows me to function and feel like my bi-ped friends. Being considered disabled just because I can take my leg off feels unnatural. My inclusion under the umbrella makes me uncomfortable.

I know that my friend sent me the greeting with kind intentions. I am sure that I am overthinking the issue, but for some reason this has really struck a chord with me this morning. While I don't consider myself to be disabled, I received the label when I became an amputee.  For most of the world, being an amputee and being disabled are paired. Perhaps they are only separate in my mind.

Proud Mom Moment

Lately Robby has been showing more signs of becoming a teenager. While he is only 9 and, at least in my eyes still a little boy, he has become increasingly snarky. He always has to have the last word to prove that he is correct, and seems to relish pointing out my mistakes. With everything I do wrong, it is absolutely amazing that I have lived over 40 years.
 Whenever appropriate, I try to bring my boys with me when meeting with a new amputee family. I find it helps to authenticate my experiences. It is easier to believe that recovery and adaptation are possible when witnessing me trying to wrangle everybody during the visit.  Yesterday afternoon, I took Robby out of school a little early so that he could accompany me on a visit to meet with a new amputee mom and her son. (I quietly hoped that the lure of being released from class an hour early would help to keep the pre-teen monster in check.)

The visit went well and everybody was behaved. Timmy quietly played with his toy laptop while I met with my new amputee friend. I answered questions and shared my experiences, but most of the time I just listened. Robby spent the time playing and chatting with her five year old son.

As we were preparing to leave, Robby said goodbye to his new friend. Without prompting from me, he gave the little guy a hug and spoke carefully. "Always remember. Just because you are scared doesn't mean that you aren't strong. Having a mom without a leg is no big deal, but I know that you don't know that right now. Soon you will though, and her robot leg will be normal."

Witnessing this heartfelt interaction, my heart swelled with pride. Despite his pre-teen demeanor at home, Robby continues to show empathy and compassion in public. (Apparently the rest of the world is not nearly as inadequate and mistake riddled as his own family.)

Busy Visits

Today is sure to be draining, both emotionally and physically. In addition to chauffeuring Robby to and from school and my own work obligations, Timmy and I have three visits scheduled with new amputees. I wish the weatherman had received my memo, but the persistent cold rain seems to have settled in for the week. It looks like I'll be doing a lot of driving in the rain today.

I always feel pressure when I am asked to meet with a new amputee. I know how difficult it is to reach out and to ask for help. I always worry that I won't find the words and that my visit will be viewed as a waste of time. More than anything, I want to make sure that the individual(s) know that they are not alone.

I am always honest when answering questions, but I am also strive to portray the amputee community in a positive light. Unfortunately, many in our society continue to view amputees with ghastly horror. The idea of living a life without a leg or an arm (or both) is too overwhelming to imagine. When somebody finds themselves thrust into that new "dreaded" reality, it is imperative that I demonstrate that their perceptions about amputees were incorrect.

Despite the weather and my own blistery limb issues, today I will be putting my best foot forward. I will be cognizant of my steps to mask my limp, and I will be smiling and upbeat despite the pain in my back and the achy rain. Wish me luck as I welcome these new friends into the amputee community. 

Back to Reality

My week long Thanksgiving vacation has come to an end, and today we return to our routine of school and work. The week flew by so quickly it is hard to believe that it is over. I had a wonderful time visiting with my Mom and seeing my family on Thanksgiving. I always enjoy going home, but it is especially nice when I am able to extend the visit beyond the weekend.  I know that she enjoyed her time with the boys, but I also think she appreciated the quiet and calm after we left.

During the past few weeks I have noticed some changes in Timmy. He has always been curious and borderline mischievous. Lately he has been flirting with Santa's Naughty List as he pushes his limits and tests everything and everybody around him. "No no no" has become our family mantra as we are constantly trying to discourage him from his latest adventure and investigation. I can tell by his guilty giggle and the smirk on his little face that he is well aware of what he is doing.

Timmy has been keeping me on my toes. He would be exhausting under the best of circumstances. Unfortunately the blister on the back of my stump has reemerged, making each step painful and deliberate. Lacking the empathy that comes with both age and experience, Timmy has taken full advantage of the head start my bum leg affords him. I am seriously considering keeping his child leash attached while inside just so I have a chance of catching him before he climbs to the top of the kitchen table to dance and swipe the cookies- again.

I'm beyond frustrated with the recurring blister on my leg. I have exhausted every amputee hack I know, and have finally conceded that a new socket is in order. I texted Elliot on Saturday and we will begin the process today. While I'm not thrilled bout the idea of having to juggle the fitting appointments into my already packed schedule, I know it will be worth it in the end. After all, I really don't have time to be in pain.