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.

Friday, August 21, 2009

I Fixed It!

I have made a discovery I am anxious to share. As I have written previously, I have been involved in an epic battle with my liner rolling down. No matter what I have tried I have not been able to keep the liner up. It has been extremely frustrating. Not only is the rolled liner uncomfortable, it is unsightly and just plain ugly under clothing.

Because I have been ill lately, my activity has been has been minimal. Walking to the bathroom or kitchen or occasionally to the living room couch to watch Robby play with his trains has been the extent of my movement. I have been provided with ample opportunity during my convalescence to reflect, to plan and "to invent."

I have been toying with various alteration possibilities to rectify my liner roll situation. I briefly considered sewing stretchy fabric to the top of the liner, extending its length. I quickly realized that this would mean that the liner would be even higher on my leg. I have "chubby" thighs, so a taller liner would most likely result in just a thicker roll.

Then I had an epiphany. I needed to increase the surface area of the top edge of the liner without adding length. Bulls-eye! I set about experimenting on old liners to come up with the optimal shape to cut into the end. I discovered that a wave cut was optimal. I cut the liner and it no longer rolls down!

I have been complaining to both my prosthetist and the company that manufactures the liners about the roll issue. I have spoken with other amputees, primarily women, who have a similar complaint. I suppose that, in the scheme of things, resolving an issue around the rolling liner isn't a priority.

Although the issue may not have been a priority for the designers, it was a frustrating inconvenience to me. In actuality, it was more of an inconvenience. The liner rolls have irritated the back of knee to the point of the skin rubbing off, leaving me prone to infection and pain when wearing my prosthetic. I guess the adage is right: If you need something done, you should do it yourself!

Thursday, August 20, 2009

My Tired Dreams...

I am so tired. My sweet little boy, the "good little sleeper" who has been the recipient of my bragging for over a year now, has decided to switch up his routine. More specifically, he somehow no longer needs sleep.

Robby's bedtime routine was the source of pride for Scott and me for a long time. Unlike most children, he went to bed without complaint. We simply told him it was time to go to bed, he would get Black Bear, and we would put him in his crib. Some nights we would hear him playing, but he quickly fell asleep and wouldn't wake until the morning.

His routine started to change a few months ago. His new race car bed has worsened the situation. He still goes to bed without complaint. He enjoys looking at the stars on his ceiling, the moon on his wall and being covered with his Thomas the Train blanket. Only now, he doesn't stay in bed.

As soon as we close his door we hear him hopping out of bed. He continually opens his bedroom door, asking to be covered up. How can you say no to a child who wants to be covered? He's got us right where he wants us because neither Scott nor I have the heart to deny him this gesture.

This has been our new routine every night, lasting for one to two hours. Robby comes to us to be covered up, and Scott and I take turns obliging. We warn him that we are not going to keep covering him, and sternly tell him to stay in bed. He promises that he will stay, and then pops up as soon as we leave.

I'm tired. By the time we put Robby to bed, I am ready to take off my leg and rest. Now I need to keep it on so that I can indulge his game. Sometimes this game continues for upwards of two hours. This necessitates my wearing my prosthetic from early morning (6:30), sometimes earlier, until late (10:30 or 11:00). This is 16 straight hours. In addition to being tired, my residual limb is becoming sore.

I am going to start taking off my leg when I sit down for meals. Unfortunately for Robby, this will mean he needs to be strapped into his high chair instead of sitting in the "big people" seat. Whenever he sees that my leg is off he takes it as an opportunity to hide my prosthetic so that he has more time to steal the ice cream and hide. On the rare occasion that he isn't hungry for ice cream, he takes it as an invitation to grab my leg and start running, hoping to play "chasing the baby."

As with all uncomfortable stages in parenthood, this too shall pass. In the meantime, I keep reminding myself that he won't be playing this game when he is a teenager. I am eagerly anticipating the time when Robby is a teenager (although he will probably insist on being called Rob) and wants to sleep. I began plotting my revenge when he was a newborn, during the never-ending nighttime feedings.

He doesn't know it yet because he is only three, but it would behoove him to stop this nighttime game soon. If he continues, I'm going to wake him up early during breaks from school and when he is home from college, expressing a desire to share our feelings and to bond. I have begun to flirt with the idea of constantly lecturing him about sex well into adulthood.

Wednesday, August 19, 2009

A Toddler's Utopia...

Little Robby has just discovered what he perceives to be Paradise. Scott and I both have made an effort to withhold this information from him. We were correct in our fears. Once Robby made the discovery, our lives have been forever changed. He has discovered that some fast food restaurants have elaborate, enclosed playrooms.

The excessive heat, paired with my newly discovered pituitary tumor and thyroid issues, have caused us to be creative in our efforts to get Robby exercise. He is a much happier little boy when he can run and play. I am a much happier Mommy when he runs and plays because it typically results in a longer sleep for him.

The other day, both Scott and I became desperate. Much to our chagrin, we packed up our little guy and took him to Burger King. He loves eating Burger King food, but we've always purchased the food through the drive-thru. This was the first time since his birth that we actually stepped foot inside a fast food restaurant .

Kids must have a sixth sense when it comes to discovering play equipment. As soon as we walked through the door, he took off like a flash. He then screamed "Oh My! Oh My!" I should have known that we were wasting our money when I ordered him food. He didn't stop playing long enough to eat.

Robby has found his Utopia. Between the climbing tubes, the toy cars and the twirly slide, he was in heaven. He ran, jumped, slid and played for nearly two hours. I discovered that they have a television in the playroom which makes my captivity bearable.

Even if I were healthy, I quickly discovered that the play area was not "amputee friendly." Between the jumping floors, crawl tubes and the net bridges, it would be treacherous for this Amputee Mommy to participate. In this case, my amputation is an excellent excuse. I'm pretty sure my "fertile, wide hips" wouldn't fit through the tubes and I would get stuck. I imagine the fire department coming to the rescue, armed with wrenches to free the disproportionately large hipped one-legged woman. With my luck, the entire ordeal would end up on the evening news.

The fast food playroom is a wonderful place for the tired Mommy. To say that I am fatigued would be an understatement. I don't have the strength to keep up with him right now, but I feel badly allowing the television to be the babysitter. At this restaurant, he can run and play with other children. I can sit quietly.

Initially we were worried that Robby would be intimidated by the size of the slide and the shear height of the equipment. It turns out that our fears were unfounded. He demonstrated no inhibitions and immediately started climbing and crawling. My only concern came about was when he entered the tunnels carrying a french fry, and slid down the corkscrew slide happily munching on a cheeseburger.

We have been to Burger King twice in the past four days. Robby is now constantly asking to go to Burger King to play. We decided to shake things up a bit today. We went to the McDonald's. "Oh My!"

Tuesday, August 18, 2009

Paging Dr. House

I adore my surgeon who performed my amputation. Dr. Schon's intelligence was matched by both practical knowledge and compassion. I have learned during the past few days, these attributes are not universal among medical professions.

I have concluded that doctors see what they want to see, and consider only symptoms which fit their preconceived diagnosis. Trust me, I have learned through first hand experience that this is both an ineffective and frustrating way to practice their craft. I have been on an emotional roller coaster. I am still sick, and I am tired of begging doctors to employ a holistic approach to my symptoms.

I desperately need Dr. Gregory House (from Fox's show House). Say what you may about this fictitious doctor's bedside manner, he considers every symptom as a valuable clue to uncovering the mystery of the diagnosis. I am beginning to believe that this approach is only seen in television and movies.

I have yet to receive a diagnosis, but several diseases have been eliminated. I am thrilled that I do not have diabetes. My blood sugar was described as "perfect." I think this is the only time the adjective of "perfect" has ever been paired with my name. Despite a history of kidney issues, kidney failure has also been ruled out.

Unfortunately, the diagnosis du jour involves a growth on my pituitary gland. My thyroid level, which was normal in March, is now elevated to 6.5. Apparently, it is now believed that I have a growth or tumor on my pituitary gland. This tumor is causing the pituitary gland to malfunction, leaving me extremely thirsty and tired and dizzy. The pressure against the gland has also caused my thyroid to malfunction, hence the elevated number.

I am told that the surgery is a relatively simple procedure. I have been told that these tumors are rarely cancerous. I no longer fear surgery. I have already endured over 25 surgeries on my leg and residual limb. I have also learned that when a surgeon refers to a procedure as "simple," they are referring to the difficulty performing the operation and not to the patient's pain or recovery.

I am still awaiting test results, and have been told to go home and relax. This is simple advice not easily employed when you are sick and struggling. I have been told that I am impatient. I agree, I want to get a diagnosis and treatment.

I am a fighter. I am strong. I am persistent. Scott wants me to add that I can be a nag, but I disagree. I suppose this is the topic for another blog. In the meantime, I will continue to drink gallons of water, try not to faint, and comply with the medical tests. And yes, Scott, I will nag the doctors until I find a diagnosis. It is an unfortunate reality that the quickest results often result when the individual follows up and stays on top of lab results.

Okay, I suppose I am being a nag. But I predict that my approach works, and that I will receive a diagnosis and treatment soon. In the meantime, I will continue referring to my undiagnosed illness as "booya booya syndrome." Somehow, giving something a name makes it less scary!

Monday, August 17, 2009

Beware of Dr. Lisa...

I'm sick. I am scared. I wish I knew the culprit, but the diagnosis hasn't completely shown itself yet. I worry that I may be facing an impending battle. The doctor said, "I think it could be one of three things, but none of them are good." Not exactly something you want to hear. Of course, this doctor left a lot to be desired, both professionally and personally, so I am trying to keep her warning in perspective.

At lunch on Thursday, I suddenly became extremely thirsty. I drank 6 glasses of tea in an attempt to quench my thirst, but the need to consume liquid didn't subside. Unfortunately, the tea consumption led me to leave the restaurant with a distended stomach.

My stomach was so swollen that Scott felt the need to take a picture. We put the photo up on my sister's Facebook page, sure that she would think it was an announcement of pregnancy. We were waiting for her response, and I was waiting to pee. She called that evening and, as anticipated, she thought that I was expecting. The urine never materialized.

I continued to be bloated on Friday, and my desire to drink never subsided. I lost my appetite, and I was experiencing brief periods of dizziness and blurry vision. I was hoping that the symptoms would subside, and that I would be able to use the bathroom.

Saturday morning, Scott took one look at me and insisted I see the doctor. Since my doctor is not available on the weekends, I went to the emergency room. Here, "Dr. Lisa" was assigned my case. (I am not using her last name to protect her anonymity, although I want to scream it from the rafters and warn any potential patients.)

As much as I tried to explain my medical symptoms, she became stuck on one notion. She did not believe that I was bloated. In fact she grabbed my stomach, jiggled it, and remarked that I "was fat." I tried to explain that I had gained 5.5 inches in my waist in two days. She retorted with "I suspect you are eating as well as drinking more, my dear."

I became frustrated, because I knew that the bloating was a symptom or, the result of not urinating after consuming an inordinate amount of water. I attempted to explain that I have recently lost over 100 pounds, and that what she was grasping was excess skin. Dr. Lisa combated with "If I had 10 dollars for every woman who has given me that excuse in my 25+ years of practicing medicine, I'd be a rich lady."

She quickly changed her approach, and perseverated on my amputated leg. She listened to my heart, but did not hear any abnormalities. My lungs were clear, and I explained that I been riding 25 to 30 miles daily on my bike. She then grabbed my stomach, again, and said, "I am sure that it feels like 25 miles but, in reality, it is probably only 2."

Dr. Lisa then explained that she believed that I should have a cardiac stress test yearly, to monitor my body's response to the amputation. She contended that my surgeon, a hero of mine, was providing me with inadequate care. Under her breathe, she muttered, "Not everybody is as thorough as me."

At this point, I found myself relieved that I was in a weakened state. I fear that, if I had been completely able-bodied, I might be facing charges. Sitting on the examination table, I began to fantasize about taking off my prosthetic and hitting her over the head with it. I also considered wrapping her with an ace bandage and stuffing gauze in her mouth. This was the only time I have completely smiled in 2 days.

Dr. Lisa drew blood, and I returned on Sunday morning for a fasting blood test. During this visit, I was told that I must have gone on a diet, because my stomach was noticeably smaller. I informed her that, after her examination, I went and spoke with my pharmacist. He suggested that I take Gas-X because it couldn't hurt. Thankfully, it has alleviated the bloat, and I am finally able to urinate. She retorted with, "Everybody thinks they are a doctor." I looked at her and said, "Yes, and now I understand why doctors call it "practicing medicine."

I shouldn't have been so witty before the blood draw. It took her 3 times to find a vein, and seemed to revel in moving the needle around while it was in my arm. As I left the office, I was told, from out of nowhere, that my husband is impatient. Scott was sitting in the car entertaining Robby. Her remark still confuses me.

I am blessed to have worked with a number of compassionate and informed physicians. In addition to leaving both appointments sick, I also left aggravated, frustrated and angry. Perhaps there is little more frustrating than being sick and being disregarded. Dr. Lisa refused to listen. She also waved off my symptoms with rudeness and snide remarks.

We are going back to the office tomorrow morning. I want to get physical copies of all of my lab work. I am going to call my regular physician and explain my predicament. I am sure that they will be able to fit me in. Hopefully we will be able to determine why I am so thirsty, dizzy and tired.

I am scared to find out what is wrong, but I also know that I need to know so that the necessary treatment can begin. Despite Dr. Lisa's comment about any diagnosis "not being good," I am remaining optimistic. After all, she didn't instill any sense of medical competence.