Monday, July 14, 2008
Love Me, Knead Me
Current mood: worried
Category: Life
Today was my first therapy session....no, no I have not finally got the mental tune up I am clearly in dire need of....today was my first day at the lymphodema clinic. I got there at the crack of 7am- which is WAY (bleep)ing early and, if you have been playing along so far, you know that people that I share DNA with do NOT like to get up early, ever!
So let me paint the picture....well, first let me make an admission. On the off-off chance that some of you have been buying the "it's cool and this is no big deal" act let me fully admit and own up to the fact that this whole lymphodema thing has had me terrified for months now. I have never been sick beyond normal colds and flu and what-not. I have never had surgery or been in the hospital and while the heavier I got I knew I was running a bigger and bigger chance of "getting something" with every pound I never foresaw this issue. I would have been fully prepared to deal with high blood pressure, being diabetic...something along those lines but this was out of left field. Then to find out that it is genetic (yes!... something else to blame on my mother!) and has more to do with me being a woman over 35 than being overweight seems,well unfair to say the least! So yeah, I have been F R E A K E D out. To the point where this weekend I had a dream an octopuss tentacle was growing inside my leg! Dream analysis? Anyone....anyone?? Yeah, me neither. Let's all just leave that one alone.
The fact that this has been stressful- and it has been- is the least of it. The 2 wasted months of going to wound care when they were not at all equipped or trained to treat me, then the 8 weeks of fighting with the insurance company to get the lymphodema pump then to have to wait another 5 weeks to get an appointment with the clinic (which told me the pump alone will never do any good btw...totally opposite of what I was orginally told). But there has been this brewing fear all along. Fear of the unknown, fear that there is actually something very wrong with me, fear that this won't get better (its chronic and I will never ever not have it the rest of my life), fear of what it is going to take to get over it, fear that even as I bust my ass losing the weight it might not do any good in the end. And, of course, you all know the itty bitty other concerns that I have had flying around my head (Troy, mother issues, work issues, money issues.....etc) so clearly this year has been a piece of cake for a thousand reasons. It's been so much and so so hard. There, I admit it!
Ok, back to my visit. First Andrea Brennan is my therapist and is literally one of the world's experts on lymphodema so- yay! She is very east coast (my guess is Nuuuuu Yawk) and looks very...frizzy. Not just her hair, which totally is but her whole personality. I don't know how to describe it better than that. She is very very nice and has totally devoted her life to this disease so I am glad to be there (as much as I am glad I ever had to know about her and this disease in the first place). I went into the exam room and she told me to get naked. Naked? Excuse me....the issue is in my legsso why do you need to see my junk? I left my chonies (undies) on and climbed under the sheet (junk covered...check!). I guess that was ok cuz she didn't say anything but she stayed down by my legs and her assistant worked "my upper lymphatic" - translation: she massaged my armpits and neck and arms all downward and then my thighs and tummy upwards. That sounds nice and relaxing right? Yeah, truth is they kneaded me like I was a lump of pizza dough!
The whole point is to stimulate the lymph system which is not doing its thing and as Andrea squeezed the fluid up Christie moved it into my belly where it is supposed to break down naturally. While all this sounds nice I have to tell you that having 2 people rubbing all over me is not something I experience everyday and it was very....akward. Plus my one leg (the one that is oozing) is still raw and sore so it was a bit painful. OH! And she told me that my "wound" is really nothing more than the equivalent of diaper rash on my leg! So much for the cool "I have an oozing sore" street cred. Nope, I have diaper rash on my leg. Great! It guess it makes sense- the skin is wet all the time with the oozing so it gets irriated and viola- rash. But seriously, I have to go out and buy diaper cream to put on it. I am going to buy condoms when I get it just to rebalance the universe!
After all the weird (but theraputic so its ok) massaging then I get to learn "the burrito technique"...perhaps not what they would call it but it shall be henceforth known as that in my world. Oh, and this is all for the low low price of $300 which insurance does not cover! So first there is a base stocking thingie....then there is a piece of foam that goes around my ankle to keep it straight. Next is the ankle wrap (I may have to indivdually wrap my toes later- I am not kidding) and then moving up the leg. At the foot and ankle it is the tightest and then a bit looser as you work your way up. The idea is to compress the fluid up and out. I should mention that these are "short stretch" bandages special for their compression. about 1/3 the give of an ace bandage. All in all is it 5 layers and today they just went to the knee. I go back on thursday and then then will wrap up to the (eeek) groin! Fun fun stuff. Now the true bit o heaven is that I have to have these on for 20 hours per day for the next 4 weeks. And I am going to have to master wrapping them myself or...give up showering. I must admit, at this point the jury is out. It takes 20-30 mins PER LEG to wrap them and that is just to the knee. (gulp) Did I mention yet that its July.....in Phoenix.....during monsoon season. (For those outside of AZ monsoon season is what they never tell you unless you read the fine print....during monsoon season when it is a blazing 114 degrees you have huge rain/dust storms and it gets...HUMID!! dry heat my left ass cheek!!)
Ok...good news. This process is started and they predict that I will reduce my leg size by 70% when it is all done and the oozing should stop very soon. Maybe even this week. So all that is good, yeah? But I am still freaked out and I have no idea what the long term plan for keeping this under control would be. I asked today is my legs will ever be "normal" and Andrea asked...define normal. Good point because what I really want is better than I have ever had and I don't know if that is possible. I don't know what is possible at all. All I can do is keeping moving ahead and do what they tell me and stick to the plan and the diet. Oh, and buy extra deodorant when I go and get my diaper rash cream!!
....and did I mention that I walk like a penguin with my legs wrapped up? For your viewing pleasure checked out my pics for the finished product.
Love Me, Knead Me
Current mood: worried
Category: Life
Today was my first therapy session....no, no I have not finally got the mental tune up I am clearly in dire need of....today was my first day at the lymphodema clinic. I got there at the crack of 7am- which is WAY (bleep)ing early and, if you have been playing along so far, you know that people that I share DNA with do NOT like to get up early, ever!
So let me paint the picture....well, first let me make an admission. On the off-off chance that some of you have been buying the "it's cool and this is no big deal" act let me fully admit and own up to the fact that this whole lymphodema thing has had me terrified for months now. I have never been sick beyond normal colds and flu and what-not. I have never had surgery or been in the hospital and while the heavier I got I knew I was running a bigger and bigger chance of "getting something" with every pound I never foresaw this issue. I would have been fully prepared to deal with high blood pressure, being diabetic...something along those lines but this was out of left field. Then to find out that it is genetic (yes!... something else to blame on my mother!) and has more to do with me being a woman over 35 than being overweight seems,well unfair to say the least! So yeah, I have been F R E A K E D out. To the point where this weekend I had a dream an octopuss tentacle was growing inside my leg! Dream analysis? Anyone....anyone?? Yeah, me neither. Let's all just leave that one alone.
The fact that this has been stressful- and it has been- is the least of it. The 2 wasted months of going to wound care when they were not at all equipped or trained to treat me, then the 8 weeks of fighting with the insurance company to get the lymphodema pump then to have to wait another 5 weeks to get an appointment with the clinic (which told me the pump alone will never do any good btw...totally opposite of what I was orginally told). But there has been this brewing fear all along. Fear of the unknown, fear that there is actually something very wrong with me, fear that this won't get better (its chronic and I will never ever not have it the rest of my life), fear of what it is going to take to get over it, fear that even as I bust my ass losing the weight it might not do any good in the end. And, of course, you all know the itty bitty other concerns that I have had flying around my head (Troy, mother issues, work issues, money issues.....etc) so clearly this year has been a piece of cake for a thousand reasons. It's been so much and so so hard. There, I admit it!
Ok, back to my visit. First Andrea Brennan is my therapist and is literally one of the world's experts on lymphodema so- yay! She is very east coast (my guess is Nuuuuu Yawk) and looks very...frizzy. Not just her hair, which totally is but her whole personality. I don't know how to describe it better than that. She is very very nice and has totally devoted her life to this disease so I am glad to be there (as much as I am glad I ever had to know about her and this disease in the first place). I went into the exam room and she told me to get naked. Naked? Excuse me....the issue is in my legsso why do you need to see my junk? I left my chonies (undies) on and climbed under the sheet (junk covered...check!). I guess that was ok cuz she didn't say anything but she stayed down by my legs and her assistant worked "my upper lymphatic" - translation: she massaged my armpits and neck and arms all downward and then my thighs and tummy upwards. That sounds nice and relaxing right? Yeah, truth is they kneaded me like I was a lump of pizza dough!
The whole point is to stimulate the lymph system which is not doing its thing and as Andrea squeezed the fluid up Christie moved it into my belly where it is supposed to break down naturally. While all this sounds nice I have to tell you that having 2 people rubbing all over me is not something I experience everyday and it was very....akward. Plus my one leg (the one that is oozing) is still raw and sore so it was a bit painful. OH! And she told me that my "wound" is really nothing more than the equivalent of diaper rash on my leg! So much for the cool "I have an oozing sore" street cred. Nope, I have diaper rash on my leg. Great! It guess it makes sense- the skin is wet all the time with the oozing so it gets irriated and viola- rash. But seriously, I have to go out and buy diaper cream to put on it. I am going to buy condoms when I get it just to rebalance the universe!
After all the weird (but theraputic so its ok) massaging then I get to learn "the burrito technique"...perhaps not what they would call it but it shall be henceforth known as that in my world. Oh, and this is all for the low low price of $300 which insurance does not cover! So first there is a base stocking thingie....then there is a piece of foam that goes around my ankle to keep it straight. Next is the ankle wrap (I may have to indivdually wrap my toes later- I am not kidding) and then moving up the leg. At the foot and ankle it is the tightest and then a bit looser as you work your way up. The idea is to compress the fluid up and out. I should mention that these are "short stretch" bandages special for their compression. about 1/3 the give of an ace bandage. All in all is it 5 layers and today they just went to the knee. I go back on thursday and then then will wrap up to the (eeek) groin! Fun fun stuff. Now the true bit o heaven is that I have to have these on for 20 hours per day for the next 4 weeks. And I am going to have to master wrapping them myself or...give up showering. I must admit, at this point the jury is out. It takes 20-30 mins PER LEG to wrap them and that is just to the knee. (gulp) Did I mention yet that its July.....in Phoenix.....during monsoon season. (For those outside of AZ monsoon season is what they never tell you unless you read the fine print....during monsoon season when it is a blazing 114 degrees you have huge rain/dust storms and it gets...HUMID!! dry heat my left ass cheek!!)
Ok...good news. This process is started and they predict that I will reduce my leg size by 70% when it is all done and the oozing should stop very soon. Maybe even this week. So all that is good, yeah? But I am still freaked out and I have no idea what the long term plan for keeping this under control would be. I asked today is my legs will ever be "normal" and Andrea asked...define normal. Good point because what I really want is better than I have ever had and I don't know if that is possible. I don't know what is possible at all. All I can do is keeping moving ahead and do what they tell me and stick to the plan and the diet. Oh, and buy extra deodorant when I go and get my diaper rash cream!!
....and did I mention that I walk like a penguin with my legs wrapped up? For your viewing pleasure checked out my pics for the finished product.
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