Saturday, March 10, 2012
Welcome to my pity party...we all have them, some more frequently than others. This mornings thoughts wander back to a question from yesterday ~ "what makes you think you can travel?" Self-doubt quickly surfaced...
So today I'm questioning why I try so hard every day to improve on the day before, when nothing ever changes?
You see, I struggle EVERY day with Lymphedema. Don't feel bad if you don't know what this is. Thousands of people have this incurable disease, yet we can rarely find a doctor in today's world that knows how to treat it.
Lymphedema is a genetic developmental disorder affecting the lymphatic system. Lymphatic fluid collects in the soft tissues, in and under the skin due to obstruction, malformation, or underdevelopment of various lymphatic vessels. Symptoms include swelling, thickening and hardening of the skin in affected areas.
Trying to control this disease is just as costly as it is to have diabetes, yet rarely are the supplies for preventative care covered by medical insurance. We 'lymphers' are trying to change this, by getting politicians to support a bill and so far it's only been approved of in South Carolina.
Yes, I have a crappy incurable disease that distorts my legs, into making people look at me in disgust because it creates an image of obesity. Even when I'm compliant and try to control the swelling, it's really out of my control. For to be compliant you must follow many steps EVERY day and often I wonder ~ Why do I bother, when nothing ever changes?
As I go through life - many activities are curtailed because of the many things I must avoid, that would cause further damage. Things like: avoiding the sun, bug bites, scratches, cuts, bruises, and hot tubs ~ just to mention a few.
When you are 'compliant' you have a daily regime to follow:
* MLD - Manual Lymphe Drainage is like a soft-touch massage of your lymp nodes. I begin at my neck, armpits, groin and work towards the affected limbs that have Lymphedema (my legs).
* Skin care - daily washing and thorough drying, checking for abrasions or wounds, and LOTS of moisturizing. You learn to pay attention to redness, as it will mean a trip to the Wound Clinic - to avoid a staph infection. Once you've had a staph infection, you will be prone to have more (trust me, you don't want to wait to be hospitalized).
*Wrapping - a cotton stockinette is the base, toes are wrapped, then cotton wraps (which look like batting), then layers of low-stretch bandages. Often I need to add foam to the lower part of my leg to make wrapping even with the engorgement of my calves.
* Shoes - you can forget about trying to find cute shoes because with all the wrapping you feel and look like 'big foot'. Your feet & legs are often several sizes larger than normal. I find that indoor / outdoor slippers work well.
When you live alone, as I do - this whole process takes several hours every morning. But you do it to be compliant...
And when you don't feel like being compliant? You complete the skin care step and then put on support stockings. This does NOT keep your legs in control, but it's quicker and wins out most days.
Why am I not compliant? My Lymphedema has moved into my left thigh and the wraps will NOT stay in place, which adds even further frustrations into my day. My doctor, an Internist, doestn't know how to care for me and my physical therapist is more interested in finding exercises for me to perform, than she is in trying to help me control this disease.
Yet, onward I plod....
In January, I was heel and toe tapping to the beat of music. Three minute songs were exhausting, but I tried to repeat it several times through the day in hopes of being able to stand up easier.
Then one day I had 'hang time' between my foot and the floor. From that day forward, I began marching. I could handle about 40 to 60 steps per day.
These are not your typical - standing up and marching around the house. These are all done while sitting in a chair. Standing and walking are something I can only do in my dreams, while sleeping at night.
By mid-February I increased my minimum to 100 steps per day and this week will increase that to 120 minimum steps.
This has NOT improved my walking, but it has improved my balance. I will accept what I can do and hope to continue to increase these minimum steps, from one month to the next. Then perhaps, someday I will get back to being able to travel down some unbeaten path and explore more of the world around me.