Wednesday, May 23, 2012

Disabled? Do You Need Help?

When suddenly faced with a life threatening illness, such as cancer, your mind and body begin to reel. You waffle between hope and despair, acceptance and denial, happiness and sorrow. Your impending future may often be in limbo and there are many times that you just simply feel like throwing in the towel. With the help and support of friends and family, hopefully those days are far and few between.

The most difficult part of living with a chronic cancer, one that never is “cured”, is the change in your daily lifestyle. It really takes quite an adjustment, one that I fight every day, to simply accept the fact that life can no longer be lived the way that I lived it, prior to my diagnosis of chronic myelogenous leukemia.

Living with CML fits into the disability criteria. I am not certain what determines whether one person with CML is approved for disability while  another person is denied, but I personally know someone that was denied disability benefits and she is probably one of the sickest, most disabled CML “friends” that I know. She struggles from constant illness, as she is a teacher; meaning that she is constantly exposed to many, many germs! She has also suffered greatly from side effects of her CML medication and been hospitalized many times.

As a person with chronic myelogenous leukemia, you can apply for disability benefits on your own, or you can request the help of specialists; people that know all of the ins and outs of helping you to receive disability benefits. If you are in need of assistance, to gain access to your disability benefits, you can learn more here.

Best of luck to all you CML’ers out there, and to anyone else suffering from a debilitating disease.

Monday, May 14, 2012

I Do Not Have One Spare Moment for CML!

Out in the Boonies!
Saying that my life is in a currently busy state, is quite an understatement. The past three weeks have been a complete whirlwind which began with the sale of one house and the purchase of another. I mean who sells their home in one day, right? I suppose that the only people that sell their home in a day are the people that are “meant” to move; the ones that are meant to begin a new life, in a new home. Because of this overwhelming sense of “you are meant to move, NOW”, I have simply gone with the flow.

Three weeks ago we loaded up a 16 foot Budget rental truck; we really only moved the boxes in the garage, a spare bed and refrigerator, an armoire and two chairs. Miscellaneous boxes and many items that should have been thrown away are now in my home in Idaho, waiting for the rest of our “important” items to arrive. It was a fifteen hour road trip and with the help of two friends, I really did little more than watch Joe load, and unload the truck.

Long Day!!
I think it was the steam cleaning the carpets, hanging the drapes and attempting to remove the remnants of my “squatter” that began to sap my energy. One night out dancing to see old friends and four days of driving around looking at property didn’t refuel my energy tank, so by the time I got back to California, I was whooped!

Since it was my birthday a few days later, and because of the gracious offer of a cabin in Big Bear Lake, (the best place that I have ever lived), we spent the week in the mountains, relaxing. I slept like the dead but had so many places that I wanted to visit and things that I wanted to do, that total “relaxation” was impossible. It was a fabulous week, but I was ready to get back home and sleep in my own bed! You know the saying, “There’s no place like home!”

After two nights in my own bed, I had to make another trip; this time to Palm Springs. I had a doctor’s appointment there, which is always nice because it gives me a great opportunity to visit with my family. So, needless to say, it was go, go, go as I had visiting and errands to take care of while I was there. Typically my mother and I stay up late and visit, but this time, I was falling asleep on the couch by 11 pm. The fatigue was really beginning to catch up to me.

Fortunately, it seems as though I am now more able to push myself without actually making myself “ill.” During the first year of my diagnosis, if I pushed myself too hard, I actually became physically sick. Now, it seems as though I just become completely exhausted; I will take this setback, over being ill, any day! After being in Palm Springs for 3 days, I came home, drug myself dancing for the first time in 6 weeks, went home and collapsed into bed.

I suppose that I shouldn’t be a bit surprised that I slept straight through the night and did not wake up until 11:45 the next morning. I was dragging ass by 3:00 in the afternoon, fell asleep on the couch at 8pm and then slept till 11:00 o’clock, the next morning, as well. After four days of sleeping more than I was awake, I was able to get back into my “normal” sleeping pattern; 10 to 12 hours a day. This CML certainly limits my “active” awake hours, and I don’t know if I will ever get over requiring so much sleep, or if I will ever not require, so much sleep; but, I am happy to report that this time, the only negative result of pushing me to my new limit, was sleep deprivation.

I often wonder, whether or not I will ever get used to the constant struggle between the leukemia that has taken up residence in my bone marrow, and my own reluctance to accept it. It is a struggle between my passion for life and my body’s inability to keep up; it is a constant struggle between heart and soul, and physical capability. It is a struggle that I really never thought that I would be engaged in. It is a struggle that has forced me to look at life, through different eyes. It is a struggle that is a constant battle and requires a different set of weapons, than those that I am accustomed to. I find it difficult to accept my new reality, and often wonder if this very struggle between leukemia and life, is what keeps me strong and sane, and gives me the strength to continue pushing myself to new limits, while continuing to push CML into the background of my life. I suppose that only time will tell…….

Once I regain my wits, I shall fill you in on all of my new and exciting news! I promise you, there is never a dull moment!
Blessings to all,

Bricks for the Brave!!