About Me

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I am a below knee amputee. More importantly, I am also Mommy to two boys, a very active 10 year old (Robby) and an mischievous toddler (Timmy). I have learned that being a parent with a disability can create some unusual and sometimes humorous situations. This blogger is available for hire! Let's talk and learn how a blog can expand your business.

Saturday, March 06, 2010

What I Know... Which is Nothing.

I was promised the results from my needle biopsy yesterday. I stayed home all day, jumping each time the phone rang. I should have known better than to trust a physician concerning a time line. Doctors lie.

When it became clear that I wasn't going to receive the results yesterday, I was optimistic that I would hear something today. Again, we have been held hostage by the possibility of news. With each ring of the telephone my heart jumps and my anxiety rises. I am only able to exhale when I see my Mom's number on the caller ID, calling to see if I've heard anything.

I have not heard anything conclusive. However, I have decided to look at the situation from a different perspective. Perhaps it is an attempt at self-preservation.

Doctors are quick to call when they have bad news to deliver. Good news tends to get pushed aside, as it is only a priority for the family. Good news means that the doctor does not have to provide further care. Therefore, they are not efficient delivering the news. At least, this is my newest theory.

I have decided that my biopsy is negative. I am going to try to stop worrying as much, secure with my bad news equals a quick result theory. Until I am proven otherwise, this is my current position.

The weather is beautiful. The sun is shining, and birds are beginning to sing. Robby is sitting in front of the television, watching Little Bear and playing with his trains. I am sitting in my glider, staring at the telephone. I have been hesitant to go outside and play with him because I didn't want to miss a call.

I am not going to be tethered to my home because of the possibility that I might receive a phone call. For my own sanity, I need to go about my normal day. I am going to have Robby put on his froggy boots, and we are going to go outside to play.

Whoever calls can leave a message. I will continue to keep you posted. In the meantime, we have some puddles to jump in!

Friday, March 05, 2010

Not Exactly What I Planned...

It has occurred to me that I need to take better care of myself. I have been lax when it comes to making sure I carve out "me time." I feel selfish taking time to pamper myself when I know that I should be working around the house or playing with Robby and Scott. The days in Chicago have reinforced what I already knew to be true. I am a much better wife and Mommy when I remember to take time for myself. I am trying to do better.

I also need to confess that I have been an irresponsible Mommy by not taking better care of my health. If I am not healthy, I am not able to care for Robby and he still needs me. I was referred to a specialist in Pittsburgh for the treatment of the pituitary tumors which were diagnosed in August. I have been playing a one-sided game of phone tag trying to obtain an appointment and treatment direction.

I have not been assertive enough with my messages. I should have insisted on a call back. I should have called daily, and then hourly, until I received a response. Life intervenes, and I suppose I wanted to ignore the obvious. I need treatment for the growths. Truth be told, I'm scared.

Finally, I was able to contact the specialists at the University of Pittsburgh. I am being scheduled for some tests in my home area, and then I will travel to meet the doctor. I don't have a specific date, but I feel that I am at least moving in the correct direction. Progress--so the fear which has been building seems to be abating!

Yesterday I went to my OB/GYN for my routine physical. Upon examination, a lump which was detected in my breast last year by the physician seems to have grown. She darted out of the room as soon as the physical was complete.

After I dressed, the doctor returned with a fistful of papers. I was informed that I needed a needle biopsy, and that it has been scheduled for the following afternoon. Wow! I went for a physical, and I left the office with an appointment for a biopsy. My head is spinning.

I was assured that, in all probability, the biopsy will be negative. I am a cancer survivor, so I am always scared. I know that it is prudent to be proactive. I would rather have more tests that yielded nothing than not have it checked and wishing that I had done something.

Part of me is regretting the commitment I made to take better care of myself. My efforts seemed to have yielded nothing but worry and more work. I now have to drive to Pittsburgh to meet with pituitary doctors. I also need to have a biopsy and follow up with a breast specialist.

Knowledge is power, and I know that I will rest easier when I am in control of my health. Regardless of the outcome, I know that I am strong. Health problems cannot be wished away, and it would be irresponsible to try. I am hoping that, by committing to take better care of myself, I will feel refreshed and energized. Trying to find the bright side, perhaps I can catch up on reading my out of date magazines in the doctors' offices and relax in the car when I drive to Pittsburgh.

** I will update the blog when I receive my results. Fingers crossed!**

Thursday, March 04, 2010

A Bittersweet Celebration...

This past Sunday, our little family piled into the car and drove nearly 3 hours for lunch. Typically driving that distance for chicken would not have been considered. However, this past Sunday was different. We were driving to attend my Aunt Ethel's 90th Birthday Lunch.

Until recently, Aunt Ethel has been remarkably healthy. She is not on any medication, and complains when she must take ibuprofen for arthritis. It is widely believed among the family that my Aunt Ethel is simply too frugal to become sick.

Aunt Ethel was raised in a different generation. She does not believe in waste, and was perhaps one of the first proponents of recycling items through reusing them. Of course, she was motivated by saving money instead of the environment.

She has a system of folding napkins so that it can be used for four uses before it is thrown away. In the not so recent past she could still cut a pie into fourteen neat slices, even though the recipe only called for eight servings. As a child, we used to look forward to her hosting the family picnic. We quickly learned that we would stop at McDonald's on the way home after munching on our obligatory chicken thigh.

I do not want to insinuate that my Aunt does not have a generous spirit. She is extremely giving with her love, her stories and her time. She took in her grandson after his Mom passed away, and he had no where to turn. She never passed judgment or asked any questions. She simply offered love, encouragement and support. You cannot put a price on unconditional love.

My Aunt Ethel is my Nan's (my maternal grandmother) younger sister. Since my Nan passed away, Aunt Ethel has become more than a great Aunt. In many ways, she has become a living connection to our past. We all look forward to picking her up so she can visit with the family on holidays and at all other celebrations. In keeping with the family tradition, Aunt Ethel rarely misses any opportunity that involves cake!

It has become painfully obvious that Aunt Ethel is no longer safe living by herself. She is becoming forgetful and frail. Despite visits by the family and her friends, she is lonely. Hopefully her new living arrangement will afford her more opportunities to socialize, and she will be happier.

Despite living her entire life within the same 60 mile area, she is spending her actual birthday packing a lifetime of memories into a small U-Haul. She is being moved to another state to live in an assisted living facility near her son. She is leaving her friends, her church and her family. She is moving away from the cemetery where she buried her daughter and her husband. She is leaving her grandson and won't be here when her great granddaughter is born.

It must be difficult for my Aunt Ethel to leave a lifetime of memories as she moves to a new place. She will be closer to her son, whom she does not see frequently. He will feel more secure having his Mom close by so that he can care for her. All these reasons are valid, but it doesn't erase the fact that we will miss her.

This past Sunday, her family and friends all congregated for a combination birthday and farewell celebration. Almost everybody who was able to attend did because, I suppose on some level, we all know that this may be the last time we see her. It was a bittersweet as we celebrated 90 years of life and then we were all faced with saying goodbye.

Happy Birthday Aunt Ethel. I love you. I appreciate and value what you have brought to our family. I wish you nothing but love and happiness. I will miss you.

<---My cousin Dan with his Grandma (Aunt Ethel)

My Mom and Ethel--->

Wednesday, March 03, 2010

An Exciting Time for Amputees

I learned volumes at the Chicago conference. Although I was working and wasn't able to attend the seminars, my time in the booth afforded me the opportunity to "pick the brains" of some of the smartest individuals in the field of prosthetics. It feels strange to write, but this is an exciting time to be an amputee.

Throughout history, advances concerning amputation care and prosthetic design have only occurred during time of war. Scores of wounded soldiers requiring prosthetics forces the federal government to invest in research and design for new devices. Without the impetus of a war to spur research, the field is simply too small to make great strides.

Bionic technology is becoming both more compact in design and more responsive. I had the opportunity to see the new PowerKnee. In addition to simulating knee movements and offering stumble recovery, the knee actually helps to propel the wearer. I am blessed that I have not lost my knee, but I can imagine that this device will help a lot of AK amputees.

In the booth I met a variety of interesting people, including two engineers who focus on research and development. I took the opportunity to voice my displeasure over the unflattering rolling liner. I am pleased that they listened to my concerns. I was impressed that they returned to speak with me the next day after they spoke with the appropriate researchers. Apparently a non-rolling conical shaped liner is in development and should be ready for testing soon.

It was in the conference booth that I discovered that my weight loss had a more far reaching impact upon my prosthetic than I realized. I knew that shedding the pounds resulted in a smaller stump, necessitating multiple sockets. I also knew that, since my limb was small, my liner size would be smaller. I assumed that the impact was limited to these areas.

I did not know that components were manufactured in various categories depending upon the weight of the user. In retrospect it is logical. A foot designed for somebody who is 100 pounds will not work the same way for a user who is 200 pounds. In the realm of prosthetic components, size matters!

I have been walking around on a foot designed for an individual who was 225-250 pounds. I am now significantly lighter. The foot was not as reactive as intended because I did not have the weight to make it work. I was placed into the appropriate category foot, and instantly felt "springier."

The difference I feel between the two categories of feet is significant. I didn't realize that I was missing a "spring in my step." As I slowly lost weight, my foot slowly became less responsive. I suspect that if the change had been immediate, I might have noticed.

I am lucky that I was working at the conference and that the inappropriate category was spotted. I continue to have the highest level of respect and admiration for my prosthetist, although I do question why the mismatch was overlooked. It does make me wander, what else am I missing?

I should have researched the impact of weight loss and prosthetics more thoroughly. My prosthetist should have known that my drastic loss of pounds put me into a different category foot. As far as I am concerned, we share responsibility for the mistake.

I left Chicago armed with increased knowledge about prosthetic components. I now have the correct foot for my weight category. I also received a really cute pair of shoes because the salespeople didn't like my Shape-Ups. Information, a new foot and a new pair of shoes... I would say that the trip was a success!

Tuesday, March 02, 2010

The Sheriff is Back...

I came home from my Chicago trip on Saturday night. Unfortunately I have been going nonstop since I arrived home. The rest and rejuvenation, which I reaped on the trip, has been evaporating.

Robby was clingy when I came home. Actually, clingy is not an apt description. I've had to sleep on the pull-out sofa in his bedroom the fast few nights because of his insecurities. In the middle of the night I feel his little hand on the top of my head. I ask him what he wants and he simply replies, "just checking." I haven't used the bathroom without a three year old chaperone since I came home!

I have been cleaning all day, and I feel as if I'm not making a dent. My washing machine has been humming all morning, yet baskets of dirty clothes are still staring at me. Although I was not on a vacation, I did enjoy my time away from home. Unfortunately, I am now paying the price for my leisurely breakfasts in bed!

I have finally gotten the playroom/ bedroom area under control. I asked Robby Rotten for assistance in cleaning up his toys, gleefully singing, "It's time to put the toys away." Apparently unmotivated, he refused. I put the toys into the suitcase that I used to go to Chicago. His treasures are all under lock and key, and he must behave to earn them back. I am amazed that I can finally see the color of my carpet, albeit stained with Playdoh and various snacks.

The toys being locked up isn't the only shock to Robby's little world. Time away afforded me the opportunity to reflect. I have concluded that Robby is teetering on the line of becoming a brat. He is no longer running the show. I am!

When Robby was experiencing "poop" issues, Scott and I became concerned about his caloric intake. He simply wasn't eating, and he was losing weight. We were happy when he expressed an interest in eating, regardless of the time or location. This lax attitude has enabled Robby to become a "grazer." He has been refusing to eat during mealtime, preferring small snacks throughout the day. His bowel issues are now under control. It is time to reign in the grazer!

I fully expect an epic battle during the next few days. Robby has already been disagreeing with many of the new "old" rules that I am enforcing. Much to his chagrin, I am going to win. I have a large bottle of Tylenol and an iPod with great headphones. His screaming and fussing is no longer an issue.

In addition to being a "mean mean Momom," I have been trying to restore order. Robby has been glued to my hip as I have been cleaning up after the hurricane which obviously passed through my house in my absence. He is now eager to help and been reminding me that he is a "good helper." I accept his assistance but I recognize the ploy. He is trying to ingratiate himself to me in an attempt to earn back his toys and the coveted cookie dough. Yes, he is a smart little boy. At least for the time being, I am still smarter. At least I hope so.

Monday, March 01, 2010

Prosthetists...The Good, The Bad, and The Lazy

After five adventure filled days in the Windy City, I am finally home. Although I missed "my boys," I thoroughly enjoyed my time away. I feel energized and rejuvenated. I also feel validated having talents recognized other than those utilized in the caring for my family. It is nice to be reminded that I am more than a wife and mother. But--one look at my house let me know that I returned in the nick of time.

Robby spent the majority of the time with his Nana but returned home to spend Friday night and Saturday with Scott in anticipation of my return. Somehow, in a mere 24 hours, Robby managed to utterly destroy the house. Although Robby certainly deserves some of the blame, the majority of the guilt lies with Scott. Apparently both of "my boys" require parental supervision when putting away their toys!

I became spoiled with both room and maid service. I felt like royalty when I picked up the telephone to order breakfast and, 20 minutes later, a beautiful waffle and a pot off coffee was delivered to my door. What a treat! I didn't make my bed when I left for the conference booth. Although I knew that the room would be cleaned in my absence, I was still giddy every day when I came back to a freshly made bed and a brand new set of little soaps (which I immediately stashed in my suit case).

Working in the exhibition hall booth every day, although tiring, was also exhilarating. I loved meeting prosthetists and professionals from all over the world. Every conversation was different, and I felt like I was always learning something new.

I met so many brilliant prosthetists who were excited about the future of the field. These individuals viewed their patients as partners in the process. They were eager to learn all of the new options which were becoming available.

Unfortunately, I was also discouraged that so many prosthetists seemed closed to new technology and innovations. Although some seemed genuinely interested in my experiences, many refused to listen. I became frustrated, and then saddened, as I encountered so many poor to merely mediocre prosthetists. As amputees, we deserve better.

As an amputee, I deserve a prosthetist who is willing to try all new technology and devices, regardless of a personal bias or even a previous experience. The Proprio ankle absolutely changed my life. I understand that another BK may not have the same experience. However, he or she deserves the opportunity to try the ankle to make the determination for themselves.

I trust my prosthetist to guide me through all of my prosthetic options. I am a busy individual who does not have the knowledge nor do I have the resources to fully research all of the components on the market. With so much technology on the market and with new devices set to launch in coming months, I depend upon my prosthetist to lead me through the maze of products.

I understand that it is not feasible for me to try every component on the market. It would be both exorbitant and laborious. I know that my needs are being looked after by my prosthetist, that he will know when a product might help me before I know of its existence. He looks at function and allows me to make the determination about comfort, weight, size and aesthetics.

Having an open rapport with my prosthetist has been paramount to my regaining an active lifestyle after my amputation. It became clear to me, through my interactions with many of the prosthetists at the conference, that not every professional is good in their field. Instead of looking after the patient's best interest, many are concerned about the ease of manufacturing and their bottom line.

Bionic technology is often dismissed because it makes manufacturing the limb both more difficult and more expensive. I am concerned about the number of amputees who are settling for poor prosthetic care merely because of the complacency of their prosthetists. I was discouraged by some of the interactions I had at the conference.

If you have a prosthetist who you feel does not listen, find a new one. If you find that your prosthetist is trying to talk you out of trying bionic technology, so that you can make the decision for yourself, find a new one. If your prosthetist doesn't educate you about various components available for a specific prosthetic that is being designed, find a new one. If you feel uncomfortable asking questions, or are told to live with an ill-fitting socket, find a new one.

We wouldn't continue going to a hair stylist who refused to let us try a new color, so why would we continue to patronize a prosthetist who refuses to let us try a new style of limb? All amputees deserve to be a partner in their prosthetic design. After all, we are the one living with the results!