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Daily Struggles...

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.
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Member Comments About This Blog Post
    Annie....I want you to check out a website I found in one of my teams. It's www.anitamoorjani.com. It's an interview given by a woman who had a near death experience and I keep going back and referring to it because I need to. She speaks of what causes illness and ill health, etc. and it really kind of gives you a new perspective on things all the way around. People can say she's nuts if they want, but I genuinely believe that what she says is completely true.
    2578 days ago
    You are one of the strongest people I know. Don't ever give up...you are a great inspiration!!! So sorry for all that you are dealing with.


    emoticon emoticon
    2592 days ago
    2597 days ago
    You are a strong woman. Would you have access to an occupational therapist? Someone who can help you with things you can do? You are a very good writer. Do you have a novel in you? How about painting. I know that you quilt. Hopefully these are things that can give you joy and can occupy your mind with pleasurable thoughts. I am sorry you have to struggle so much.
    2598 days ago
  • SAL1512
    Bigs HUGS to you because of what you have to endure. I hear more of what you are saying than you realize. Our youngest son, Ben, had a chronic disease - Marfan Syndrome. Life is different when you can never get well and you struggle treating the symptoms every day. Hang in there!
    Sally emoticon
    2598 days ago
    In reading your blog, you have so much grace. This grace shows throughout your writing and your quilts. It's not how many goals you reach,
    but how many lives you touch and you've touched many. It's that courage you are showing that inspires a person to better themselves. You are a remarkable person.
    2599 days ago
  • _KATHY
    Annie, what a strong woman you are. I know you work hard for all you have and all you do. I hope it helps to know you have so many supportive friends here. When I think of you, I see your spirit and your awesome talent for quilting. I can only dream of creating such beautiful pieces. Vent all you like anytime you like. I know it helps
    2599 days ago
    First of all, I have a great big (((HUG))) for you. Hugs are what I do best when I don't know how to help someone otherwise. The only thing I can think of when reading your post is actually two things. First, I totally commend you for your continued vigilance in caring for your needs, especially in light of what a pain in the you-know-what this is! And especially for carrying on through the winter when you are still grieving for your parents. You are making progress, and although we can't always see those baby steps as progress, that's exactly what it is.

    Secondly, I just wanted you to know what isn't always apparent, and that is the impact that you have on others when you write and share on SP or other internet sites. What you write and comment does impact others, and is always something of value.

    Hang in there, kiddo!
    2599 days ago
  • MEME102
    Hugs to you my dear friend!! Life isn't fair -- but it is what we have. We find joy in small things and try to forget the bad. Sometimes we succeed at that...sometimes not. But, a journey toward health -- any form of it IS worth the journey - you've noticed your balance improve - who knows what could be next. I agree with the other poster -- if you could find a dr. who knows more about your disease might help some. Don't give up something will change....when you least expect it!
    2599 days ago
    Hi Annie !
    You are allowed to vent my friend !
    I don't know how you are getting through all this .. you are a very strong awesome lass to still be trying to exercise ..
    Do you think you need to find a Doctor that will listen to you and try to help with your Lymphedema?
    I think if it were me I would be definitely looking for some on who really cares ..
    Keep up the Chair marching it is really good for you ...
    I started on that and now I am walking for miles ... it all takes time ... Love and hugs Susie emoticon emoticon emoticon
    2599 days ago

    Comment edited on: 3/10/2012 8:01:38 PM
    I'm so sorry for the suffering Annie, but I"m proud of you for continuing to work at this. I, too, am suffering from this in my left leg (at the moment) and it is very frustrating...I haven't had a Dr. recommend anything to me yet to deal with it...they just said 'well it's not a blockage or anything' and sent me home. So I try to exercise and moisturize and hope it doesn't get worse. I know it's hard, though.
    Keep marching my friend! You will soon be able to march out to Wayne's motor home and see the world!
    2599 days ago
  • SAMI199
    Don't ever give up,my friend. You are a remarkable lady with so much to give. I wish I knew why we get to deal with this-hang in there.

    emoticon emoticon emoticon
    2599 days ago
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