Why is the United States so behind in Lymphedema treatment and outreach?
From what I have found on the Internet, the UK and other countries are more advanced in treatment and awareness of Lymphedema. Could all of my fellow Lymphies send me information on your experiences with finding treatment (proper treatment), any obstacles to finding such treatment, costs of treatment, level of education of the individual who treated you (M.D., Nurse Practitioner, Nurse, Occupational Therapist, Physical Therapist, etc.).
What did your treatment entail? How did you feel about the treatment?
I am thinking this could be a part of something larger than my blog. Perhaps a publication? A call to step up treatment practices…
Let’s educate ourselves on our experiences and push for more treatment options, better treatment facilities, more specialized training for treatment programs, etc.
Please share this with any other Lymphedema networking you are a part of! Thanks in advance.
Also, great resource for those in the UK:
http://www.lymphormation.org/associations.php#6
Tuesday, March 15, 2011
Thursday, March 10, 2011
Update on Swelling and Fitness Goals
Alright, I am days away from new and improved compression stockings. My doc moved me up to 40 to 50 for the compression grade. They should be coming in the mail soon and I am anxious to see if they keep my swelling down. I recently bought new wraps and have been better about the manual lymph drainage so I have noticed a phenomenal difference in the mornings, just not at the end of the day.
I also have increased my fitness goals at the gym and am now completing miles in much less time (on the elliptical). I range anywhere from 10.5 minutes to 11.5 minutes per mile. My ultimate goal is to get to 10 minutes per mile so I can knock out 3 miles in 30 minutes and then walk the 4th mile on the treadmill.
And how am I doing with my diet? Well I have completely cut out soda, iced tea etc. I do drink gatorade or powerade after the gym some days when I feel dehydrated. I have also cut out the sugar from my coffee and now use Splenda which really does not ruin the flavor of my coffee! I am still battling my addiction with cookies and candy. One day at a time, right?
I also have increased my fitness goals at the gym and am now completing miles in much less time (on the elliptical). I range anywhere from 10.5 minutes to 11.5 minutes per mile. My ultimate goal is to get to 10 minutes per mile so I can knock out 3 miles in 30 minutes and then walk the 4th mile on the treadmill.
And how am I doing with my diet? Well I have completely cut out soda, iced tea etc. I do drink gatorade or powerade after the gym some days when I feel dehydrated. I have also cut out the sugar from my coffee and now use Splenda which really does not ruin the flavor of my coffee! I am still battling my addiction with cookies and candy. One day at a time, right?
Friday, February 25, 2011
A Word from the Wise
I was quickly reminded on Monday of the caution that those who suffer from Lymphedema, or any medical condition for that matter, should take with doctors, physical therapists, medical supply companies, insurance companies etc.
On Monday, I had an appointment at a medical supply company here in Chicago. Now this is a company that has chains all over the place. I have new insurance, Cigna, which is much better than the student insurance I was on before because this is my company’s insurance. Cigna requires that I go to a facility such as Scheck and Siress, a medical supply and prosthetic supply company, to be properly fitted in order for the compression garments to be covered. I am going up to 40 – 50 compression grade because of the severity of the swelling as of recent. Since I have never worn these before, a proper fitting seemed like it could only help. Well I was wrong, very wrong…
I started getting a bad vibe the moment I walked in. The woman at the front desk asked me to fill out paperwork which I was glad to do. She then started going into the payment policy and asked me how much of my deductible I have paid to date which I thought was a bit intrusive but could just be me. Then, she lectured me on how I should have pre-registered. I did this, of course, when I made the appointment. I kindly pointed out that I had no idea how much of my deductible I have paid to date since I just had appointments last week that have yet to be billed to my insurance. I then added that once it goes through my insurance, I would pay any balance but that it must first go through my insurance. She disagreed and said I had to pay today and that if I had pre-registered that none of this would be an issue. I turned beet red as I do whenever I am angry or embarrassed. I let her know that I did, in fact, register when I made the appointment and added that they should be more organized. I really know how to stick it to someone…
You can see how this roundabout conversation progressed from there. I then became very firm and said that they must speak to my insurance before I pay. I then added that no information was given when I made the appointment about the payment policy or costs of being fitted. Then she showed me to the room where I could see the fitter after sitting in the waiting room for half an hour. Therefore, surly front desk lady and I had yet to finish our delightful conversation.
As I sat waiting for the fitter for another 15 minutes, she came back and stated that compression garments need to be ordered so I wouldn’t be paying anyway until they are delivered. Really, huh, so what was the point of that conversation just minutes before?
Then the fitter came in. He seemed nice and began asking me about how I have been managing my Lymphedema and what I currently do to treat the condition. Then he began talking about Elvarex, a Jobst product for compression and said how it would be ideal for me. He brought me a sample of this massively thick and hideous stocking. Call me vain but the entire reason my doctor moved me up to 40 – 50 and not custom is that I can keep some sort of normal lifestyle with clothing not to mention the cost is upwards $300!! Then he realized that Elvarex is for people with vein related conditions. He then measured me and left for about 15 minutes to find me compression stockings. Somehow, he would not get off the topic of custom stockings. The kicker is that my doctor wrote me an Rx that was so specific as to that it had to be opaque and 40 – 50 so I couldn’t even figure out why the fitter was even going there.
After I noted several times that my doctor and I discussed this and we only want to try 40 – 50. The fitter responded that it was difficult to find compression stockings of that grade with my measurements and again said I should get custom stockings. When I prodded further, he had only checked Medi (Mediven). So then I rattled off all of the compression brands that I knew. This sent him off for another 15 minutes.
He came back excited that he had talked to the a service representative at Sigvaris and found me stockings. I was relieved. I would get my stockings and get the heck out of there. I had now been there over an hour. The fitter and I talked measurements, decided on my size and then he stated the price. He quoted $198.00. Then he added that I would need to leave a deposit. Yes, he said that despite what my favorite surly front desk lady had said earlier…
Let me draw your attention to the $198 price of the compression garment. I have been buying compression stockings for over two years now. They cost anywhere from $75 - $150 depending on compression grade, brand, style etc. In fact, the most recent pair that I purchased was Jobst and it cost $85 for 30 – 40 compression grade.
I will stop my rambling (I warned you of my tendency to do this in the very title of my blog) and get to my point.
While there are many companies out there that are in business to suit your needs, there are double the number of companies out there to exploit your needs and your wallet. I knew that price was up there but when I went home and researched further into costs, I found that I could purchase Medi for roughly $100, Juzo costs $75 - $100 and Sigvaris costs $75 to $149.
http://www.discountsurgical.com/
I also realized that my deductible was a hell of a whole lot higher than I had remembered and with the awesome discounts my insurance gives, I am nowhere near it. So, I would have to pay this out of pocket. Now why would I purchase one stocking for $200 when I can get it elsewhere for half that price?
This is not the first time I have experienced this and it brings me to tears every time. I do not understand why people are so ready to take advantage of those who are in need. I must have compression stockings unless I want the nickname of Elephant Girl. I do have a better job now but I still can’t afford $200 compression stockings. I have to go to my doctor 2-3 times a year for check-up appointments, I have to buy materials for the short stretch bandaging like tape, I have to buy the short stretch bandages, etc. In all, we are talking close to a thousand a year. I can’t afford to be ripped off.
Because so much of our self-esteem and obstacles in life are intertwined with our lymphedema, we are incredibly vulnerable and susceptible to people who think they can cash in on us. Until the world changes and the people in it, that will be something to remember for a lifetime.
Which reminds me of a certain letter I need to send to the corporate offices of Athletico…
On Monday, I had an appointment at a medical supply company here in Chicago. Now this is a company that has chains all over the place. I have new insurance, Cigna, which is much better than the student insurance I was on before because this is my company’s insurance. Cigna requires that I go to a facility such as Scheck and Siress, a medical supply and prosthetic supply company, to be properly fitted in order for the compression garments to be covered. I am going up to 40 – 50 compression grade because of the severity of the swelling as of recent. Since I have never worn these before, a proper fitting seemed like it could only help. Well I was wrong, very wrong…
I started getting a bad vibe the moment I walked in. The woman at the front desk asked me to fill out paperwork which I was glad to do. She then started going into the payment policy and asked me how much of my deductible I have paid to date which I thought was a bit intrusive but could just be me. Then, she lectured me on how I should have pre-registered. I did this, of course, when I made the appointment. I kindly pointed out that I had no idea how much of my deductible I have paid to date since I just had appointments last week that have yet to be billed to my insurance. I then added that once it goes through my insurance, I would pay any balance but that it must first go through my insurance. She disagreed and said I had to pay today and that if I had pre-registered that none of this would be an issue. I turned beet red as I do whenever I am angry or embarrassed. I let her know that I did, in fact, register when I made the appointment and added that they should be more organized. I really know how to stick it to someone…
You can see how this roundabout conversation progressed from there. I then became very firm and said that they must speak to my insurance before I pay. I then added that no information was given when I made the appointment about the payment policy or costs of being fitted. Then she showed me to the room where I could see the fitter after sitting in the waiting room for half an hour. Therefore, surly front desk lady and I had yet to finish our delightful conversation.
As I sat waiting for the fitter for another 15 minutes, she came back and stated that compression garments need to be ordered so I wouldn’t be paying anyway until they are delivered. Really, huh, so what was the point of that conversation just minutes before?
Then the fitter came in. He seemed nice and began asking me about how I have been managing my Lymphedema and what I currently do to treat the condition. Then he began talking about Elvarex, a Jobst product for compression and said how it would be ideal for me. He brought me a sample of this massively thick and hideous stocking. Call me vain but the entire reason my doctor moved me up to 40 – 50 and not custom is that I can keep some sort of normal lifestyle with clothing not to mention the cost is upwards $300!! Then he realized that Elvarex is for people with vein related conditions. He then measured me and left for about 15 minutes to find me compression stockings. Somehow, he would not get off the topic of custom stockings. The kicker is that my doctor wrote me an Rx that was so specific as to that it had to be opaque and 40 – 50 so I couldn’t even figure out why the fitter was even going there.
After I noted several times that my doctor and I discussed this and we only want to try 40 – 50. The fitter responded that it was difficult to find compression stockings of that grade with my measurements and again said I should get custom stockings. When I prodded further, he had only checked Medi (Mediven). So then I rattled off all of the compression brands that I knew. This sent him off for another 15 minutes.
He came back excited that he had talked to the a service representative at Sigvaris and found me stockings. I was relieved. I would get my stockings and get the heck out of there. I had now been there over an hour. The fitter and I talked measurements, decided on my size and then he stated the price. He quoted $198.00. Then he added that I would need to leave a deposit. Yes, he said that despite what my favorite surly front desk lady had said earlier…
Let me draw your attention to the $198 price of the compression garment. I have been buying compression stockings for over two years now. They cost anywhere from $75 - $150 depending on compression grade, brand, style etc. In fact, the most recent pair that I purchased was Jobst and it cost $85 for 30 – 40 compression grade.
I will stop my rambling (I warned you of my tendency to do this in the very title of my blog) and get to my point.
While there are many companies out there that are in business to suit your needs, there are double the number of companies out there to exploit your needs and your wallet. I knew that price was up there but when I went home and researched further into costs, I found that I could purchase Medi for roughly $100, Juzo costs $75 - $100 and Sigvaris costs $75 to $149.
http://www.discountsurgical.com/
I also realized that my deductible was a hell of a whole lot higher than I had remembered and with the awesome discounts my insurance gives, I am nowhere near it. So, I would have to pay this out of pocket. Now why would I purchase one stocking for $200 when I can get it elsewhere for half that price?
This is not the first time I have experienced this and it brings me to tears every time. I do not understand why people are so ready to take advantage of those who are in need. I must have compression stockings unless I want the nickname of Elephant Girl. I do have a better job now but I still can’t afford $200 compression stockings. I have to go to my doctor 2-3 times a year for check-up appointments, I have to buy materials for the short stretch bandaging like tape, I have to buy the short stretch bandages, etc. In all, we are talking close to a thousand a year. I can’t afford to be ripped off.
Because so much of our self-esteem and obstacles in life are intertwined with our lymphedema, we are incredibly vulnerable and susceptible to people who think they can cash in on us. Until the world changes and the people in it, that will be something to remember for a lifetime.
Which reminds me of a certain letter I need to send to the corporate offices of Athletico…
Friday, January 14, 2011
Return of Frankenstein
So despite all of the progress in the past year, I fear it has stopped. It’s as though a few weeks ago my leg just decided to stop responding to bandaging and manual lymph drainage. No matter how much drainage I attempt, the darn thing wants to stay the same size. I know that I need new supplies but my knee cap is lost somewhere in a sea of rich protein fluid. It’s big. It aches. And it is seriously hindering clothing options. I actually pulled down my baggy jeans this morning. Those are the very same baggy jeans I wore during the 3 weeks of occupational therapy where I had to wrap my leg every day.
Yesterday, I was at the gym and got 1.5 miles into my workout when it seemed to just crap out on me. Well I wasn’t having it. I like exercising so I forced my leg to 3.5 miles with an elliptical/treadmill combo. Did that hurt? Yes. Did it probably make my leg more swollen? Yes, but I didn’t care.
I wrap it, result: swollen. I massage it, result: swollen. I do light exercise on the elliptical with no impact, result: swollen. I elevate it at night, result: swollen. I wear my compression stocking every day (new ones might I add), result: swollen. Seriously?! It’s not like I am going to stop managing it because I know that is just bottom of the barrel intelligence right there but come on, something has to get better.
I have just finished paying off the majority of my medical bills so I am dreading having to go back to my doctor and then probably back to more physical/occupational therapy and back to more bills, bills bills.
Some days I feel like my life consists of bills and a swollen leg and that’s about it. Argh. That’s all I have to say about that for now. Depressing isn’t it…
Yesterday, I was at the gym and got 1.5 miles into my workout when it seemed to just crap out on me. Well I wasn’t having it. I like exercising so I forced my leg to 3.5 miles with an elliptical/treadmill combo. Did that hurt? Yes. Did it probably make my leg more swollen? Yes, but I didn’t care.
I wrap it, result: swollen. I massage it, result: swollen. I do light exercise on the elliptical with no impact, result: swollen. I elevate it at night, result: swollen. I wear my compression stocking every day (new ones might I add), result: swollen. Seriously?! It’s not like I am going to stop managing it because I know that is just bottom of the barrel intelligence right there but come on, something has to get better.
I have just finished paying off the majority of my medical bills so I am dreading having to go back to my doctor and then probably back to more physical/occupational therapy and back to more bills, bills bills.
Some days I feel like my life consists of bills and a swollen leg and that’s about it. Argh. That’s all I have to say about that for now. Depressing isn’t it…
Wednesday, December 29, 2010
Bye bye skinnies
Lately, my leg has been bigger. I have a feeling it’s a mixture of increased stress, less sleep, increased exercise, and I need to replace my wraps. With the bigger leg, I said bye bye to my skinny jeans and to my leggings much of the time too. So here I am again at the question that has baffled women for ages, "what should I wear?"
With the recession, I am guessing you are like me and have to be a budget shopper. Depending on how bad your lymphedema is, I think you can still look great when you're going out with your friends even when your leg acts up. Don't do what I used to do...that is, begin a full on attack against your closet--throwing your clothes all over the floor and bed and then surrendering with a collapse on the ground defeated.
We (lymphies) should stay away from heels most of the time. I do, however, think if you have kitten heels and aren’t running all over the city that you should wear them for the office or out with friends for a few hours. Please stay away from 3 to 5 inch heels. We all know we have trouble balancing and walking as it is without adding extra inches that could really hurt us.
So my favorite 4 items to have for a fail-safe outfit:
1. Kitten heels
2. Boot cut jeans
3. Belt
4. Slimming black top or any color really
The heels. Bandalino. I am sure other brands are good but I have never found another shoe that is affordable and doesn’t kill my feet. I think the kitten heel is about 1 inch-maybe 1.5. Its small but it’s just enough to give you a nice dressed up look. The trick is, don’t ever pay more than $30 for these shoes. On occasion they are $40. If you go to a place like DSW or Off Broadway, you can usually get them majorly discounted. The great thing is that these shoes last. My first pair I got for working retail and that pair lasted all the way from retail and foot fatness to job interviews to going out with friends. I think I have had them about 2.5 years and they still look good. I just got my second pair for the holidays. Even with my swollen foot, they didn’t hurt. I didn’t have to go up a size so it actually fits both feet and they look great.
The jeans. H&M. They have all different sizes and all lengths. I got the boot cut ones and they fit great. They are $40 not on sale so they really aren’t too badly priced compared to all those fancy and overprices department store jeans.
The belt. I got this as part of my uniform for retail but any belt will do. I would stick to the basic colors like black or brown so it can go with more. Mine is a patent leather wide belt that I wear higher on my waist to make my waist appear thinner. It works!
The top. Really any top will do. A flowy silk one, a dressier t shirt, a flowy tank, etc. Any color will do too. Well stay away from yellow and black, you don’t want to look like a bumble bee.
Add accessories. Add a necklace, bracelets, earrings etc. You don’t have to go wild. You could wear a pair of bright, funky earrings and then nothing else. Just add a little something to the outfit with jewelry and it will look nice.
So that is my opinion on the fail-safe outfit for us lymphies.
With the recession, I am guessing you are like me and have to be a budget shopper. Depending on how bad your lymphedema is, I think you can still look great when you're going out with your friends even when your leg acts up. Don't do what I used to do...that is, begin a full on attack against your closet--throwing your clothes all over the floor and bed and then surrendering with a collapse on the ground defeated.
We (lymphies) should stay away from heels most of the time. I do, however, think if you have kitten heels and aren’t running all over the city that you should wear them for the office or out with friends for a few hours. Please stay away from 3 to 5 inch heels. We all know we have trouble balancing and walking as it is without adding extra inches that could really hurt us.
So my favorite 4 items to have for a fail-safe outfit:
1. Kitten heels
2. Boot cut jeans
3. Belt
4. Slimming black top or any color really
The heels. Bandalino. I am sure other brands are good but I have never found another shoe that is affordable and doesn’t kill my feet. I think the kitten heel is about 1 inch-maybe 1.5. Its small but it’s just enough to give you a nice dressed up look. The trick is, don’t ever pay more than $30 for these shoes. On occasion they are $40. If you go to a place like DSW or Off Broadway, you can usually get them majorly discounted. The great thing is that these shoes last. My first pair I got for working retail and that pair lasted all the way from retail and foot fatness to job interviews to going out with friends. I think I have had them about 2.5 years and they still look good. I just got my second pair for the holidays. Even with my swollen foot, they didn’t hurt. I didn’t have to go up a size so it actually fits both feet and they look great.
The jeans. H&M. They have all different sizes and all lengths. I got the boot cut ones and they fit great. They are $40 not on sale so they really aren’t too badly priced compared to all those fancy and overprices department store jeans.
The belt. I got this as part of my uniform for retail but any belt will do. I would stick to the basic colors like black or brown so it can go with more. Mine is a patent leather wide belt that I wear higher on my waist to make my waist appear thinner. It works!
The top. Really any top will do. A flowy silk one, a dressier t shirt, a flowy tank, etc. Any color will do too. Well stay away from yellow and black, you don’t want to look like a bumble bee.
Add accessories. Add a necklace, bracelets, earrings etc. You don’t have to go wild. You could wear a pair of bright, funky earrings and then nothing else. Just add a little something to the outfit with jewelry and it will look nice.
So that is my opinion on the fail-safe outfit for us lymphies.
Fitness goals
With a new job comes a hell of a lot of stress. Just kidding—sort of. With the new job I landed, I was finally able to afford a gym membership. Did it have the miraculous result on my leg I thought it would have? No, but the rest of me is looking better!
I do think that exercise is one of the most important ways to manage lymphedema. It is difficult though, that is for sure. If you read my older posts, you’d see that I used to be a runner so I used to love exercise. If you met me, you’d know how neurotic I am and therefore, how imperative it is that I use that use exercise to take me down a few notches…
Things have changed though since my days of running. I have this extra weight from my leg that I didn’t have before and it can make exercising really difficult. I honestly think that if I put too much pressure on myself or scheduled overly specific goals for my exercise I would fail horribly and disappoint myself. I never know how my leg will be on a given day. Some days my leg doesn’t bother me at all while others I can only go 3.5 mph on the treadmill. Then other times, I get a little too excited and then overdo it which can be painful and increase the swelling.
I think setting realistic goals for exercise is extremely important. You want goals but with lymphedema, you have to know when to modify those goals. I usually go for 3-4 miles with a combination of the elliptical and the treadmill. On days that my leg feels good, I try to beat my typical time so that I can complete more miles in a shorter time frame. When my leg is not feeling so good, I will keep my time on the elliptical short with maybe only a mile on there and then I will move to the treadmill and do another mile or two on their depending on my leg. I will get this pain in my calf, it’s not intense but more like a stiffness that is incredibly uncomfortable. I always lower my speed and then try to walk it off. If that doesn’t work, I try to get to 2 to 2.5 miles and then I call it quits.
Today, my leg is aching and massive because I flew from Florida last night to Chicago and my leg isn’t taking the pressure change so well. I can actually feel the heat of my foot from the outside of my boot. I am going to the gym today because I enjoyed the holiday food and cookies a bit too much. I would love to get in there and have a hard core workout but that’s not going to happen because walking to work was a challenge today. So I am going to do my mile on the elliptical and then get on the treadmill. If my leg is feeling good, I will aim for 2 more miles on the treadmill at a moderate pace.
My point in all this babbling is that it’s good to set goals but for people with lymphedema, you have to understand your body’s limitations and modify your goals accordingly.
I have a few goals for myself with exercise:
1. Increase energy level
2. Build up enough strength to start doing yoga again without really embarrassing myself…
3. Tone my body up so I can wear my speedo without scarring the other members
4. Be healthy
One note about exercising with lymphedema. I think that we are all vulnerable to exhaustion because of our condition. If you try too much too fast, you will wear yourself down. Take it easy, the energy will come with time and the more you can accomplish at the gym or whatever your fitness goals are.
My next big to-do is to cut back on sugar. And I really love sugar! I will have more posts about my sugar withdrawals as I start to cut it (well lower it, let’s not get crazy…) from my diet.
I do think that exercise is one of the most important ways to manage lymphedema. It is difficult though, that is for sure. If you read my older posts, you’d see that I used to be a runner so I used to love exercise. If you met me, you’d know how neurotic I am and therefore, how imperative it is that I use that use exercise to take me down a few notches…
Things have changed though since my days of running. I have this extra weight from my leg that I didn’t have before and it can make exercising really difficult. I honestly think that if I put too much pressure on myself or scheduled overly specific goals for my exercise I would fail horribly and disappoint myself. I never know how my leg will be on a given day. Some days my leg doesn’t bother me at all while others I can only go 3.5 mph on the treadmill. Then other times, I get a little too excited and then overdo it which can be painful and increase the swelling.
I think setting realistic goals for exercise is extremely important. You want goals but with lymphedema, you have to know when to modify those goals. I usually go for 3-4 miles with a combination of the elliptical and the treadmill. On days that my leg feels good, I try to beat my typical time so that I can complete more miles in a shorter time frame. When my leg is not feeling so good, I will keep my time on the elliptical short with maybe only a mile on there and then I will move to the treadmill and do another mile or two on their depending on my leg. I will get this pain in my calf, it’s not intense but more like a stiffness that is incredibly uncomfortable. I always lower my speed and then try to walk it off. If that doesn’t work, I try to get to 2 to 2.5 miles and then I call it quits.
Today, my leg is aching and massive because I flew from Florida last night to Chicago and my leg isn’t taking the pressure change so well. I can actually feel the heat of my foot from the outside of my boot. I am going to the gym today because I enjoyed the holiday food and cookies a bit too much. I would love to get in there and have a hard core workout but that’s not going to happen because walking to work was a challenge today. So I am going to do my mile on the elliptical and then get on the treadmill. If my leg is feeling good, I will aim for 2 more miles on the treadmill at a moderate pace.
My point in all this babbling is that it’s good to set goals but for people with lymphedema, you have to understand your body’s limitations and modify your goals accordingly.
I have a few goals for myself with exercise:
1. Increase energy level
2. Build up enough strength to start doing yoga again without really embarrassing myself…
3. Tone my body up so I can wear my speedo without scarring the other members
4. Be healthy
One note about exercising with lymphedema. I think that we are all vulnerable to exhaustion because of our condition. If you try too much too fast, you will wear yourself down. Take it easy, the energy will come with time and the more you can accomplish at the gym or whatever your fitness goals are.
My next big to-do is to cut back on sugar. And I really love sugar! I will have more posts about my sugar withdrawals as I start to cut it (well lower it, let’s not get crazy…) from my diet.
Some Time Away
I'd like to say that I haven't devoted much time to my blog because I got a new job or because my ancient computer finally died but I think the real reason that I haven't posted is because sometimes I like to ignore the fact that I have lymphedema. I don't want to think about it or talk about it despite the daily reminder that is, well, my leg.
I was avoiding my 'medical condition' wonderfully (that is, I continued to care for my leg but just pretended I was normal) when I found my medical reports from the surgery I had when I was in my early twenties. That's when a very uneducated doctor decided to cut me open in my lymph node area. The reason was that swelling had begun in my thigh and the lymph nodes in that area were inflamed. This is up for debate but this is either when the doctor gave me secondary lymphedema or worsened my primary lymphedema. Who knows who cares because one thing is for sure—this doctor screwed up my leg. As I was saying, I found the medical report when I went to visit my family in Florida for the holidays. It said that the patient (me) appeared to understand the possible implications of the surgery. One such possible implication was deformity. How vague but nonetheless I burst into tears. I don't recall hearing any statistics on the likelihood of developing lymphedema which is of course a sort of deformity. Were they referring to the tiny scar as a deformity? All I know is that this doctor did not discuss lymphedema with me. Either he was not aware of the condition or didn't fully understand the consequences of disrupting a young girl's (or anyone's) lymphatic system.
And then I cried my eyes out for a while. Thinking about how this will impact me for the rest of my life. I have always wanted to honeymoon in Fiji, somewhere tropical, or on a cruise. Uh, scratch that. I imagine being active during pregnancy-wearing cute pregnancy clothes, going to yoga with other pregnant Moms. Argh, scratch that-I can't even do yoga now because the darn leg is about as flexible as a pile of cement and most likely, I will be on bed rest due to a gargantuan leg. Then I imagined juggling work, babies, and lymphedema. Wrap every night. Physical therapy throughout my lifetime and especially when pregnant. Then I imagine just wanting to wear a dress and more tears poured out.
I may have been avoiding some of these thoughts for a while and then they just broke through like a tsunami.
Luckily, things seemed better in the morning. I know that none of this is "ideal" but we cope-we adapt. Wrapping my leg every night seemed like a torture sentence when my occupational therapists first told me now it’s just annoying but I still do it.
We could all throw our arms up, fall to the ground and stay there-hopeless. But do you know what would happen? You'd get evicted because you didn't pay your rent because you didn't work to make money and then you'd be out on the street alone. Why alone? Because you let your limb(s) dictate the quality of your relationships with others. Instead of braving the world, you sat alone inside with your limb(s) and from experience I can tell you, it’s not all that great of a companion. And you know what would happen next? Well then your health would deteriorate because you couldn't take care of yourself and then life would be gone.
So, my point, get off the floor. Go to work. Pay your bills. Go on dates. Hang out with friends. Get married (hopefully all of us, regardless of sexual orientation can do this someday). Go on honeymoon in Fiji even with a big leg. Have kids. Have grandkids. Take care of yourself and leave this world old and wrinkled.
I was avoiding my 'medical condition' wonderfully (that is, I continued to care for my leg but just pretended I was normal) when I found my medical reports from the surgery I had when I was in my early twenties. That's when a very uneducated doctor decided to cut me open in my lymph node area. The reason was that swelling had begun in my thigh and the lymph nodes in that area were inflamed. This is up for debate but this is either when the doctor gave me secondary lymphedema or worsened my primary lymphedema. Who knows who cares because one thing is for sure—this doctor screwed up my leg. As I was saying, I found the medical report when I went to visit my family in Florida for the holidays. It said that the patient (me) appeared to understand the possible implications of the surgery. One such possible implication was deformity. How vague but nonetheless I burst into tears. I don't recall hearing any statistics on the likelihood of developing lymphedema which is of course a sort of deformity. Were they referring to the tiny scar as a deformity? All I know is that this doctor did not discuss lymphedema with me. Either he was not aware of the condition or didn't fully understand the consequences of disrupting a young girl's (or anyone's) lymphatic system.
And then I cried my eyes out for a while. Thinking about how this will impact me for the rest of my life. I have always wanted to honeymoon in Fiji, somewhere tropical, or on a cruise. Uh, scratch that. I imagine being active during pregnancy-wearing cute pregnancy clothes, going to yoga with other pregnant Moms. Argh, scratch that-I can't even do yoga now because the darn leg is about as flexible as a pile of cement and most likely, I will be on bed rest due to a gargantuan leg. Then I imagined juggling work, babies, and lymphedema. Wrap every night. Physical therapy throughout my lifetime and especially when pregnant. Then I imagine just wanting to wear a dress and more tears poured out.
I may have been avoiding some of these thoughts for a while and then they just broke through like a tsunami.
Luckily, things seemed better in the morning. I know that none of this is "ideal" but we cope-we adapt. Wrapping my leg every night seemed like a torture sentence when my occupational therapists first told me now it’s just annoying but I still do it.
We could all throw our arms up, fall to the ground and stay there-hopeless. But do you know what would happen? You'd get evicted because you didn't pay your rent because you didn't work to make money and then you'd be out on the street alone. Why alone? Because you let your limb(s) dictate the quality of your relationships with others. Instead of braving the world, you sat alone inside with your limb(s) and from experience I can tell you, it’s not all that great of a companion. And you know what would happen next? Well then your health would deteriorate because you couldn't take care of yourself and then life would be gone.
So, my point, get off the floor. Go to work. Pay your bills. Go on dates. Hang out with friends. Get married (hopefully all of us, regardless of sexual orientation can do this someday). Go on honeymoon in Fiji even with a big leg. Have kids. Have grandkids. Take care of yourself and leave this world old and wrinkled.
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