Wednesday, November 28, 2012

Bite your tongue!

tongue biteOver the last couple of years I have started biting my tongue on occasion (about every 6-8 weeks). These bites are not like taking a nip out of the tip of your tongue. These bites are in the middle third of the tongue and when I bite into it there is a crunching sound and some excruciating pain. Most of the time I take a hunk of flesh out of the tongue and it bleeds a little.

When I checked with my neurologist about this problem, he said my jaw and tongue muscles are atrophying. My wife tells me I need to be more aware of my chewing habits. I did notice that many of these times I am chewing on a salad.

Since beginning to take Warfarin for my blood clot, my blood has thinned totongue pressure a point where anything (a scratch or cut, for example) won’t stop bleeding unless pressure is applied. Well, when I bit my tongue last Wednesday, it would not stop bleeding. Pressure didn’t seem to help. Ice seemed to help a little. Finally, pressure with a tea bag finally worked. Two hours later, however, it broke open again. More ice, pressure and tea bags.

A week later the tongue is still swollen a little, but everything else seems back to normal. And, I am listening to my wife … like I always do. (Okay, my fingers are crossed)

Being someone who is normally pretty optimistic, very little gets me down for long. I seem to have a way of turning negative events into a learning experience and find something positive about it. But, this incident has me concerned. If it was a more serious wound, or internal bleeding (from a fall, for example, causing a serious sprain or broken bone), the situation might require immediate attention.

QuestionWhen I discussed this problem of biting my tongue with another KD’r about my age, he mentioned he is also having this problem. Now I am wondering if more people living with Kennedy’s Disease have this problem as their atrophy progresses. Please let me know if you are also experiencing this issue.

Tuesday, November 20, 2012

The Highest Form of Giving Thanks

Give thanksThanksgiving is a time to reflect and give thanks. It is also when family and friends ‘break bread’ together. It is a time for ‘counting our blessings’.

However, this blog post is about the constant recognition that life is perfect and only our thoughts and perceptions are flawed.

I was introduced to the term ‘ceaseless prayer’ several years ago. At the time it was only a concept to me – something that I didn’t understand at all. How does one constantly pray? Perhaps I didn’t really understand the term ‘prayer’. So, I looked up ceaseless prayer recently and came across the following explanation by Guy Finley: “… the practice of ceaseless prayer … doesn’t preclude being active in life; what is required of us is that our first action is stillness, followed by a willingness to receive whatever we have been given by Life.”
ceaseless prayerAfter reading this I recognized an attribute that I had acquired over the last few years. Dozens of times each day I find myself giving thanks for all the little things in life that God has given me. Even more important, I notice that there are times where I just am at peace with myself and the world. No thoughts or words are necessary. I am not focused on any one particular thing. I am totally at peace – content –comfortable – thankful for just being alive and experiencing the beauty and perfection of life.

How can one not be thankful for this wonderful thing that we call life? Yes, it is not perfect because our concept of perfection is badly flawed. Yet, it is perfect in every way. Only our thoughts disrupt this acknowledgement and tear us away from this peaceful existence … this communion with God.
  • Should having a disease without a known treatment disqualify me from this recognition?
  • Should having family members going through difficult times stop me from experiencing it?
  • Should discovering a blood clot in the leg make it any less real?
  • Should having a bad day … things not going my way … change anything?
I don’t think so. But, it often does. Sometimes, during these special moments, the stillness is broken with thoughts, comparisons, and analysis.

Fortunately, once you have sensed this beauty and perfection, the feeling never really goes away. It can be masked (or covered up) with my being ‘back in my world’. Yet, something deep inside reminds me that, “Life is okay. It is actually perfect in every way.” And, I am at peace again.

Happy Thanksgiving


Tuesday, November 13, 2012

When is it too thin or not thin enough

Week 2 of 26

shot-pillToday I finished my twice-a-day anti-clotting drug shots. I will not miss this morning and evening ritual and my wife won’t either. My stomach looks like a black and blue pin cushion. And, my left hand has pinholes on every finger. The pinholes will continue as they test me twice a week until I stabilize at the new desired anticoagulation level.

The Warfarin dosage is still being tweaked to find the right level … somewhere between 2.0 to 3.0. The 2-3 times a week blood test will help monitor where I am at and also let me know when it is time to increase or decrease the Warfarin level.

I feel I am getting to know the doctor’s office staff too well. My once a year visit has turned into five in two weeks and growing. This is a trend that is not conducive to my feeling of being a healthy and happy person.

calf-exerciseI know it is hard to believe, but my daily exercise routine that has been so effective over the last couple of years has increased with the addition of several calf exercises. I have incorporated these exercises into my morning routine as well as performing these calf exercises every 2-3 hours. Exercise appears to help keep the calf muscles loose and the pain minimized.

I had never really considered blood clots before. A sister and brother had them, and my mother-in-law has them also. It is now another thing for me to consider as my mobility declines. I have already changed a few of my routines to ensure that I keep the blood flowing through my legs all day.

I now have adopted a new saying …

“Just keep moving”


Sunday, November 11, 2012

Remember our veterans

  And, honor them today, tomorrow and every day

When I returned from my second Vietnam tour in 1969, I was greeted byveterans-make-love war protestors in the San Francisco airport. I still remember the feeling as I walked down the long corridor from the plane to baggage claim. Those of us in uniform were yelled at, spit upon, and called all kinds of names including, “warmongers” and baby killers.” It was a rude awakening and not the kind of ‘welcome home’ we were looking forward to.

Fortunately, on my second leg, the pilot walked up to me when I first found my seat and asked if I wanted to move up to First Class. I had never flown First Class before and it was quite the experience. I felt honored and the food sure was great.

veterans-thank-youMy brother, Don, who was a Korean veteran, picked me up at the airport. He took me to an American Legion post for a drink. When I walked in, my brother embarrassed me by announcing that I had just returned from Vietnam. I was immediately surrounded by WWII and Korean veterans asking questions, thanking me for my service, and buying me drinks. I felt pretty special.

We then drove to my home town and my brother took me to the VFW post. As we entered, he again announced that I had just returned from Vietnam. And, once again, I was surrounded by other veterans. It was a great feeling to be supported, but I couldn’t shake that initial feeling of being hated by the protestors in San Francisco.

Fortunately, our returning veterans today are not experiencing anythingveterans-given-so-much like those of us who returned from Vietnam. Yet, many soon discover that returning into society is often difficult and not very rewarding.

I don’t believe we do a good job of helping our veterans reorient into civilian life. These men and women should be honored and rewarded for their service to our country. They, along with their families, have sacrificed so much and deserve more because of what they have given.

I am not a person who believes in all the entitlement programs that are available today. That being said, I do not think we do enough for our veterans and their families. And, we, as citizens, employers, managers, and owners, could definitely do more. So, please, …

veterans-honorHonor our veterans

… today, tomorrow and every day

Tuesday, November 6, 2012

On a personal note …

Another challenge ahead for me.

Saturday I felt my left calf trying to cramp. Now, I haven’t had a leg cramp in years, so, to say the least, I was surprised and a little concerned. When trying to walk, I experienced some pain in my calf and foot. That night I noticed my calf was swollen and the back of the calf had a hot-spot about the size of a half-dollar. As I tried to massage the area of the cramp, it was painful to the touch.

blood-clot-1Sunday morning I could hardly walk. My left calf and foot hurt with every step. The more pressure I put on the front of the foot (ball and toes) the more pain I experienced. Yet, being the exercise nut I am, I did my short routine. The more I exercised the legs, the better it felt. When I was through with my routine, the leg felt pretty good. When I checked the calf that evening, it was more swollen and painful to the touch.

Monday morning … the pain was even worse and the half-dollar size spot on the calf was hot and very painful to the touch. My wonderful wife told me to call the doctor.

That afternoon, I saw my doctor who immediately sent me over for anblood-clot ultrasound. The actual ultrasound was very uncomfortable … the position I was in and not being able to move caused neck cramps and back spasms. They checked me from the hip to the ankle, several times. The technician found a blood clot in the vein and the backup of blood was about five inches long (leading down the leg).

Back to the doctor I went and he gave me the bad news. Blood Thinner! He also said because the pills take a week or two to kick in, I had to have twice a day injections in the stomach for seven to ten days with regular visits to the doctor to test my blood. Worse of all, because I am less than mobile, I need to stay on the drug for six months.

As we analyzed the possible reason for the clot, it appears it probably was probably caused by my writing for long periods of time without taking a break. For the last ten months I have been writing several hours a day without moving. I remember days were I sat typing for four hours straight without a break. Okay, I admit it, that was not too smart of me.

Well, today is day two of another adventure in my life. Needless to say, I won’t be sitting for more than two hours at a time again.

Don’t Forget to Vote!

VoteFor those of my readers in the United States, I am asking that you make an effort to vote today. It doesn’t matter who you vote for; what matters is that you vote.

This is projected to be another close election, so every vote counts and you can make a difference.