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…
Friday, February 25, 2011
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.
Monday, August 30, 2010
Walking and Saving
I have recently taken my exercise up a notch. I live about a mile and a half from work which is nice and convenient. It is far enough away for me to take public transportation. I used to hate getting to work "icky" with the heat and humidity but I have decided that in spite of feeling icky, I would walk to and from work. I just bring my deodorant, a fragrance and a fresh shirt to change into.
So this was my walking schedule last week:
Monday: 1.5 miles(only walked home from work)
Tuesday: 3 miles
Wednesday: 3 miles
Thursday: 3 miles
Friday: 4 miles
-Walked to and from work and walked about a mile to get lunch
Saturday (yes I had to work...): 3 miles
Total: 17.5
My goal this week is to walk 20 miles!
Now onto my saving money:
Before, I was only walking home but taking the train to work each morning so I spent $2.25 each day on the train. Walking to work this week saves me $11.25 and saves $45 per month. In two months time, I have saved up enough to buy new compression stockings. Woohoo right?
I realize that not everyone is as close to work as I am and public transportation or driving is a must. If you have an hour lunch break, you could take a 20-30 minute walk and save the other time to eat. Then when you get home, all you have to put in is another 20-30 minutes of walking and then bam, you're done for the day.
Other ways to add in exercise throughout the day:
-Walk up the stairs rather than take the elevator
-Park in the farthest parking spot possible so you have to walk
-If there is a lunch place right next to your office, avoid it, go for the one about .5 miles away then you have walked a mile, cleared your head and gotten some Vitamin D.
That is all of my words of wisdom for the day :)
So this was my walking schedule last week:
Monday: 1.5 miles(only walked home from work)
Tuesday: 3 miles
Wednesday: 3 miles
Thursday: 3 miles
Friday: 4 miles
-Walked to and from work and walked about a mile to get lunch
Saturday (yes I had to work...): 3 miles
Total: 17.5
My goal this week is to walk 20 miles!
Now onto my saving money:
Before, I was only walking home but taking the train to work each morning so I spent $2.25 each day on the train. Walking to work this week saves me $11.25 and saves $45 per month. In two months time, I have saved up enough to buy new compression stockings. Woohoo right?
I realize that not everyone is as close to work as I am and public transportation or driving is a must. If you have an hour lunch break, you could take a 20-30 minute walk and save the other time to eat. Then when you get home, all you have to put in is another 20-30 minutes of walking and then bam, you're done for the day.
Other ways to add in exercise throughout the day:
-Walk up the stairs rather than take the elevator
-Park in the farthest parking spot possible so you have to walk
-If there is a lunch place right next to your office, avoid it, go for the one about .5 miles away then you have walked a mile, cleared your head and gotten some Vitamin D.
That is all of my words of wisdom for the day :)
Tuesday, August 24, 2010
More Insurance Woes
After being with United Health Care Student Resources for two years and receiving reimbursement for numerous compression stockings, I received a letter yesterday stating that these payments were made in error. That is, the several individuals I spoke with, including supervisors, either lied that I had a $2,000 coverage amount for compression hosiery or they are all stupid. Either way, this reflects incredibly poorly on United Health Care and their sub part, Student Resources. I plan on posting their letter to me and my response to their letter. I also plan on raising some serious hell. This is disgusting that a medically required item, such as a compression stocking, is not covered under this policy.
I am planning a full on attack. I am going to write a formal complaint to United Health Care. I also plan on writing a letter of complaint to the Attorney General Lisa Madigan. In addition, the NAIC (National Association of Insurance Commissioners) and The Office of Consumer Health Insurance of Illinois will also be hearing from me!
I will also forward all of these letters of complaints to Loyola University where I went to school and which was a university health plan.
I would also like to stress to the Lymphedema community that United Health Care is not friendly to those of us who have been diagnosed. I have had refusal of payment on a number of claims that should have been covered. Their company's practices are dishonest and corrupt. If you are diagnosed with Lymphedema, you will be forced to pay more out of pocket than the policy or customer service department states. The policy is overly general and leaves too much room for limitations and denials.
If you have any information on who else I should contact or any other information that may help with this situation, I would greatly appreciate it.
I am planning a full on attack. I am going to write a formal complaint to United Health Care. I also plan on writing a letter of complaint to the Attorney General Lisa Madigan. In addition, the NAIC (National Association of Insurance Commissioners) and The Office of Consumer Health Insurance of Illinois will also be hearing from me!
I will also forward all of these letters of complaints to Loyola University where I went to school and which was a university health plan.
I would also like to stress to the Lymphedema community that United Health Care is not friendly to those of us who have been diagnosed. I have had refusal of payment on a number of claims that should have been covered. Their company's practices are dishonest and corrupt. If you are diagnosed with Lymphedema, you will be forced to pay more out of pocket than the policy or customer service department states. The policy is overly general and leaves too much room for limitations and denials.
If you have any information on who else I should contact or any other information that may help with this situation, I would greatly appreciate it.
Friday, August 6, 2010
My Story
I still have more to add and edit of this but here it is:
At the start of 2009, I was working retail full time to support myself through graduate school. It was at the end of January and the start of February that the swelling in my leg began. I don’t remember where it started swelling in my leg first. I had a required outfit I wore at the one retail job which consisted of high heels. This is probably what aggravated my condition, being on my feet for long periods of time in high heels.
I called the school clinic as the pain and swelling worsened at the beginning of March 2009. The nurse asked me to go straight to the ER in fear that I had a blood clot. I listened to her and after work, I went to the hospital. I sat at the hospital for hours as they did ultra sounds, blood tests, and I think an MRI. The ER doctor came to me when he had the results and said my leg was fine, there was nothing wrong with it. I looked down at my swollen leg and looked back up at him and told him my leg was obviously not normal and something was wrong with it. The ER doctor was rude and dismissive. I left the ER hopeless and angry. Something was wrong with me and I knew it even if this doctor didn’t.
I sought out a doctor at Weiss Hospital at the end of March in 2009. His specialty was vascular surgery. After many tests, he diagnosed me with May-Thurner Syndrome, a condition of the veins. I was scheduled for surgery in May and was going to have a stint put in my iliac vein. The day of the surgery, the doctor changed his mind and instead did an angioplasty. After the surgery and several days of rest and off my feet, my leg had gone down to near normal size. I remember it was the weekend of the fourth when I was so excited to wear a dress out. I thought I was fixed. Not long after I returned to work, the swelling returned as well. Luckily, in June, I landed an office job and was able to get off my feet. The swelling, however, continued to worsen.
The medical bills went through insurance and now I was receiving the bills. I had accumulated thousands in medical expenses. The out of pocket expenses escalated. My anesthesia alone for the surgery was $740 out of pocket. The surgery ended up being $860 out of pocket which I have just now paid down to $340 as of July 2010. The ER visit was about $200. The tests at Weiss prior to the surgery came to around $400. I had made not even $15,000 in 2009 working for near minimum wage in retail. Even when I landed the office jobs, they were not quite full time. I was drowning in debt by this point. The stress was overwhelming me. My leg only grew and grew. Due to the medical expenses, I did not seek more medical treatment until November 2009.
In the five months that I did not seek any medical help, my leg worsened further. Walking was painful. Sitting was painful. My clothes no longer fit. Shoes barely fit on my left foot. I walked with a limp and felt extremely self conscious about my leg. I viewed myself so critically. I was tired all of the time. My leg drained me. The medical expenses were draining me.
In November, I could not take it anymore and sought a second opinion from another vascular surgeon at Northwestern. I brought all of my medical records for the doctor to review. After looking at my medical records and talking with me for 5 minutes, he diagnosed me with Lymphedema. He told me this was a lifelong, chronic medical condition. I was in shock. I asked him if there was a cure and he said there was not. He then told me to go see a physical therapist that specializes in Lymphedema. He was cold and short and left the room within ten minutes. He was not at all fazed by the fact that he had just told me my life will forever be different. He didn’t explain to me what Lymphedema is. He did not explain what to expect in physical therapy. I left the office in tears.
The doctor was the first blow. The second blow was when my insurance informed me they would not cover the cost of the doctor visit because it was a second opinion. The ten minutes in the awful doctor’s office cost me $591.00. Things were not looking up and would get worse before they improved.
I looked through my health insurance for in network physical therapists. Ahtletico was in network and therefore I called and to see if they had a Lymphedema trained physical therapist. They said they did so I made an appointment. This was December 2009.
I did not know what to expect with the physical therapy and when I met my physical therapist, Beth, I thought things would get better. She was incredibly sweet and I thought this would be the help that I needed. My sessions consisted of exercises to build muscle in my leg and a brief manual lymph drainage massage. In the second or third session, Beth hooked me up to a machine that caused muscle spasms. She said this would help the lymph flow. For 20-30 minutes, I sat hooked up to this machine that made my leg spasm uncontrollably. It was incredibly uncomfortable. Beth gave me one short stretch bandage and said this bandage would help also. She had me put it directly on my skin and secure it with the metal clasps. Beth had given me no time frame for treatment. I wore my compression stockings every day but was not yet seeing a difference in my leg.
I went to visit my family in Florida at the end of December and part of January. I was wearing my compression stockings every day. When I returned from Florida, I had two more appointments which put me at 12 sessions with Beth. I started noticing a difference with my leg, but not the kind of difference I was hoping for.
Mid January, my leg and foot had become more swollen than ever before. My foot was so swollen, my shoes barely fit on it and I was forced to wear my sneakers. I had to stay home from work for several days because I could not walk on my foot due to the pain.
I knew something was wrong and that I needed help because whatever Beth was doing was not right. I bought a book written by specialists in Lymphedema, Living Well with Lymphedema. I learned from that book what therapy should have consisted of. I was supposed to learn how to give myself manual lymph drainage, how to bandage my legs, etc.
I researched and researched and found a doctor listed on a Lymphedema website, Dr. Joseph Feldman with North Shore University Health System. I called my school clinic and explained to them my situation. They had me come in to for an appointment. This incredibly kind nurse helped me get a referral to see the new doctor. I then made an appointment with Dr. Feldman and he was wonderful. He was incredibly knowledgeable about Lymphedema and referred me to have occupational therapy at the rehabilitation center. He explained what Beth had done wrong. She had obviously not been trained in Lymphedema despite stating that she was. The machine may have worsened my condition.
I then started occupational therapy with two women in February. The first session they told me exactly what to expect; I was given an exact time frame 2 visits per week for 2-3 weeks. They taught me how to give myself a lymph drainage massage, to bandage my legs, how to care for my leg, what to avoid, etc. On the first visit, I was shown what bandaging was. This was a bit traumatic. I was told that during this intensive treatment, I was to wear my bandages every day. My bandaging consisted of 3 layers. The first layer was a stockinette which went on the bottom so that the short stretch bandages did not touch my skin. The second layer was a foam padding layer and the third layer was the short stretch bandages. I had five short stretch bandages to cover my entire left leg.
I had to learn how to do this on my own because I was to wear it every day for the next three weeks. After the three weeks, I was to wrap my leg every night. Now that I am so accustomed to wrapping, it isn’t a big deal. I have gotten used to it as part of my schedule. At the time though, I had to wear baggy pants to fit the bandaging and sneakers also. I felt ugly. I was relieved to find treatment but the treatment was overwhelming. Looking back, I was very depressed at the time. I was extremely self conscious and I remember crying often. My life was going to be different; there was no doubt about that.
The therapy included all of the bandages and supplies. When the three weeks were over, I had all of the resources I needed to manage this condition on my own. I was very grateful and still am for those two women who were my occupational therapists. They gave me strength to deal with this. They would listen to my worries about clothes and even shaving. Everything becomes an issue when you have Lymphedema, even shaving…
So here I am, now six months later. The pain in my leg has decreased considerably, I wrap my leg every night which keeps swelling down and I give myself the lymph drainage massage. My leg will probably never look like my right leg. I haven’t seen my inner ankle bone in my left foot in over a year! My leg does seem to get better with exercise and healthy eating. Although, I was told to never go back to running because it will worsen swelling and my condition. I wear my compression stocking every day and wrap my leg each night. It takes about 30 minutes to wrap my leg each night. There have been nights that I stay out until 2 or 3 in the morning but I always wrap my leg when I get home. I actually feel better once my leg is wrapped because I do not feel the tightness and swelling when it is wrapped.
At the start of 2009, I was working retail full time to support myself through graduate school. It was at the end of January and the start of February that the swelling in my leg began. I don’t remember where it started swelling in my leg first. I had a required outfit I wore at the one retail job which consisted of high heels. This is probably what aggravated my condition, being on my feet for long periods of time in high heels.
I called the school clinic as the pain and swelling worsened at the beginning of March 2009. The nurse asked me to go straight to the ER in fear that I had a blood clot. I listened to her and after work, I went to the hospital. I sat at the hospital for hours as they did ultra sounds, blood tests, and I think an MRI. The ER doctor came to me when he had the results and said my leg was fine, there was nothing wrong with it. I looked down at my swollen leg and looked back up at him and told him my leg was obviously not normal and something was wrong with it. The ER doctor was rude and dismissive. I left the ER hopeless and angry. Something was wrong with me and I knew it even if this doctor didn’t.
I sought out a doctor at Weiss Hospital at the end of March in 2009. His specialty was vascular surgery. After many tests, he diagnosed me with May-Thurner Syndrome, a condition of the veins. I was scheduled for surgery in May and was going to have a stint put in my iliac vein. The day of the surgery, the doctor changed his mind and instead did an angioplasty. After the surgery and several days of rest and off my feet, my leg had gone down to near normal size. I remember it was the weekend of the fourth when I was so excited to wear a dress out. I thought I was fixed. Not long after I returned to work, the swelling returned as well. Luckily, in June, I landed an office job and was able to get off my feet. The swelling, however, continued to worsen.
The medical bills went through insurance and now I was receiving the bills. I had accumulated thousands in medical expenses. The out of pocket expenses escalated. My anesthesia alone for the surgery was $740 out of pocket. The surgery ended up being $860 out of pocket which I have just now paid down to $340 as of July 2010. The ER visit was about $200. The tests at Weiss prior to the surgery came to around $400. I had made not even $15,000 in 2009 working for near minimum wage in retail. Even when I landed the office jobs, they were not quite full time. I was drowning in debt by this point. The stress was overwhelming me. My leg only grew and grew. Due to the medical expenses, I did not seek more medical treatment until November 2009.
In the five months that I did not seek any medical help, my leg worsened further. Walking was painful. Sitting was painful. My clothes no longer fit. Shoes barely fit on my left foot. I walked with a limp and felt extremely self conscious about my leg. I viewed myself so critically. I was tired all of the time. My leg drained me. The medical expenses were draining me.
In November, I could not take it anymore and sought a second opinion from another vascular surgeon at Northwestern. I brought all of my medical records for the doctor to review. After looking at my medical records and talking with me for 5 minutes, he diagnosed me with Lymphedema. He told me this was a lifelong, chronic medical condition. I was in shock. I asked him if there was a cure and he said there was not. He then told me to go see a physical therapist that specializes in Lymphedema. He was cold and short and left the room within ten minutes. He was not at all fazed by the fact that he had just told me my life will forever be different. He didn’t explain to me what Lymphedema is. He did not explain what to expect in physical therapy. I left the office in tears.
The doctor was the first blow. The second blow was when my insurance informed me they would not cover the cost of the doctor visit because it was a second opinion. The ten minutes in the awful doctor’s office cost me $591.00. Things were not looking up and would get worse before they improved.
I looked through my health insurance for in network physical therapists. Ahtletico was in network and therefore I called and to see if they had a Lymphedema trained physical therapist. They said they did so I made an appointment. This was December 2009.
I did not know what to expect with the physical therapy and when I met my physical therapist, Beth, I thought things would get better. She was incredibly sweet and I thought this would be the help that I needed. My sessions consisted of exercises to build muscle in my leg and a brief manual lymph drainage massage. In the second or third session, Beth hooked me up to a machine that caused muscle spasms. She said this would help the lymph flow. For 20-30 minutes, I sat hooked up to this machine that made my leg spasm uncontrollably. It was incredibly uncomfortable. Beth gave me one short stretch bandage and said this bandage would help also. She had me put it directly on my skin and secure it with the metal clasps. Beth had given me no time frame for treatment. I wore my compression stockings every day but was not yet seeing a difference in my leg.
I went to visit my family in Florida at the end of December and part of January. I was wearing my compression stockings every day. When I returned from Florida, I had two more appointments which put me at 12 sessions with Beth. I started noticing a difference with my leg, but not the kind of difference I was hoping for.
Mid January, my leg and foot had become more swollen than ever before. My foot was so swollen, my shoes barely fit on it and I was forced to wear my sneakers. I had to stay home from work for several days because I could not walk on my foot due to the pain.
I knew something was wrong and that I needed help because whatever Beth was doing was not right. I bought a book written by specialists in Lymphedema, Living Well with Lymphedema. I learned from that book what therapy should have consisted of. I was supposed to learn how to give myself manual lymph drainage, how to bandage my legs, etc.
I researched and researched and found a doctor listed on a Lymphedema website, Dr. Joseph Feldman with North Shore University Health System. I called my school clinic and explained to them my situation. They had me come in to for an appointment. This incredibly kind nurse helped me get a referral to see the new doctor. I then made an appointment with Dr. Feldman and he was wonderful. He was incredibly knowledgeable about Lymphedema and referred me to have occupational therapy at the rehabilitation center. He explained what Beth had done wrong. She had obviously not been trained in Lymphedema despite stating that she was. The machine may have worsened my condition.
I then started occupational therapy with two women in February. The first session they told me exactly what to expect; I was given an exact time frame 2 visits per week for 2-3 weeks. They taught me how to give myself a lymph drainage massage, to bandage my legs, how to care for my leg, what to avoid, etc. On the first visit, I was shown what bandaging was. This was a bit traumatic. I was told that during this intensive treatment, I was to wear my bandages every day. My bandaging consisted of 3 layers. The first layer was a stockinette which went on the bottom so that the short stretch bandages did not touch my skin. The second layer was a foam padding layer and the third layer was the short stretch bandages. I had five short stretch bandages to cover my entire left leg.
I had to learn how to do this on my own because I was to wear it every day for the next three weeks. After the three weeks, I was to wrap my leg every night. Now that I am so accustomed to wrapping, it isn’t a big deal. I have gotten used to it as part of my schedule. At the time though, I had to wear baggy pants to fit the bandaging and sneakers also. I felt ugly. I was relieved to find treatment but the treatment was overwhelming. Looking back, I was very depressed at the time. I was extremely self conscious and I remember crying often. My life was going to be different; there was no doubt about that.
The therapy included all of the bandages and supplies. When the three weeks were over, I had all of the resources I needed to manage this condition on my own. I was very grateful and still am for those two women who were my occupational therapists. They gave me strength to deal with this. They would listen to my worries about clothes and even shaving. Everything becomes an issue when you have Lymphedema, even shaving…
So here I am, now six months later. The pain in my leg has decreased considerably, I wrap my leg every night which keeps swelling down and I give myself the lymph drainage massage. My leg will probably never look like my right leg. I haven’t seen my inner ankle bone in my left foot in over a year! My leg does seem to get better with exercise and healthy eating. Although, I was told to never go back to running because it will worsen swelling and my condition. I wear my compression stocking every day and wrap my leg each night. It takes about 30 minutes to wrap my leg each night. There have been nights that I stay out until 2 or 3 in the morning but I always wrap my leg when I get home. I actually feel better once my leg is wrapped because I do not feel the tightness and swelling when it is wrapped.
Friday, July 9, 2010
Vitamins and Exercise
One of the nice things about facebook is meeting people you would never normally meet. When I was diagnosed, I wanted to find others out there like me. Luckily, through facebook, I met so many amazing girls dealing with Lymphedema too. We started trading advice and info to one another about exercise, vitamins, clothing, etc.
One girl recommended I try Grape Seed Extract. I wanted to do some research first and found out that certain supplements like the grape seed extract may help those of us with lymphedema.These supplements are called bioflavinoids. There are many out there. I am currently taking Rutin. I have also ready that Butcher's Broom works too. Here is some info:
http://healthlibrary.epnet.com/GetContent.aspx?token=e0498803-7f62-4563-8d47-5fe33da65dd4&chunkiid=21574
The FDA has not confirmed whether this stuff works and it may not work in some or it may be in my head, lol. Since I have started taking Rutin, I have also started walking more and weight lifting so it could be the exercise that has improved my leg swelling but it has improved. I thought it was worth a try and thought I would share this information.
I also have found a wonderful machine for my lymphedema. Its the elliptical machine. It is great because there is absolutely no impact on my legs and hips. It feels like running!
It could be the wrapping but in the last few weeks since I have increased my exercise (and bit my lip and carried on when it felt painful), my leg has decreased in pain and swelling. I actually went to a pool last weekend and was walking around in my bathing suit because I was not embarrassed by my leg.
If you feel like you can, try to increase your exercise a little and you will notice a difference I think. If you try too much too fast, it will be painful and your leg will get swollen. Try starting with a one mile walk and then increase it gradually.
One girl recommended I try Grape Seed Extract. I wanted to do some research first and found out that certain supplements like the grape seed extract may help those of us with lymphedema.These supplements are called bioflavinoids. There are many out there. I am currently taking Rutin. I have also ready that Butcher's Broom works too. Here is some info:
http://healthlibrary.epnet.com/GetContent.aspx?token=e0498803-7f62-4563-8d47-5fe33da65dd4&chunkiid=21574
The FDA has not confirmed whether this stuff works and it may not work in some or it may be in my head, lol. Since I have started taking Rutin, I have also started walking more and weight lifting so it could be the exercise that has improved my leg swelling but it has improved. I thought it was worth a try and thought I would share this information.
I also have found a wonderful machine for my lymphedema. Its the elliptical machine. It is great because there is absolutely no impact on my legs and hips. It feels like running!
It could be the wrapping but in the last few weeks since I have increased my exercise (and bit my lip and carried on when it felt painful), my leg has decreased in pain and swelling. I actually went to a pool last weekend and was walking around in my bathing suit because I was not embarrassed by my leg.
If you feel like you can, try to increase your exercise a little and you will notice a difference I think. If you try too much too fast, it will be painful and your leg will get swollen. Try starting with a one mile walk and then increase it gradually.
Tuesday, June 22, 2010
Insurance Issues
I am feeling stressed over my medical claims not being covered. Thousands upon thousands have been accumulated in medical bills. I really wish I did not have to pay any money to Athletico. I feel bitter that the physical therapist lied to me about her qualifications. Hundreds later she actually worsened my condition. There is a physical therapy board that I plan on writing to about the treatment (or lack thereof) I was given.
Then there are the thousands I spent on the doctor that misdiagnosed me and performed a pointless surgery.
I am feeling a little bitter about all this.
I wish I could have been diagnosed earlier, before the recession. I will never understand why it hit at this point in my life.
Today is not a good day but I will continue to try to keep my head up. And in the meantime, I will work on taking out some of my bitterness on Athletico and the physical therapist that took advantage of me at one of the hardest points in my life.
Then there are the thousands I spent on the doctor that misdiagnosed me and performed a pointless surgery.
I am feeling a little bitter about all this.
I wish I could have been diagnosed earlier, before the recession. I will never understand why it hit at this point in my life.
Today is not a good day but I will continue to try to keep my head up. And in the meantime, I will work on taking out some of my bitterness on Athletico and the physical therapist that took advantage of me at one of the hardest points in my life.
Lymphedema and Tiredness
Lately, it feels as though my leg is wearing me down and I cannot kick this tiredness. I don't know how to tire myself out like I used to with running. I imagine that the mix of less exercise, more stress and this medical condition make for a nasty combination.
I have noticed that even though there can be some pain and extra swelling accompanied with exercise, that will give me more energy.
Also, when I eat a large amount of fruits and vegetables, I do notice less swelling. The problem, sometimes I need more food than a massive fruit salad for dinner.
I am trying some supplements of Rutin and Bioflavinoids which contains Grape Seed Extract and Quercetin. These have not been confirmed via research to help patients with Lymphedema but I am willing to try it.
I am hoping I will figure out some effective combinations to help me feel less tired.
If you have any success stories, I am all ears. If you want to vent about how freakin' tired you are and how its a huge downer for your social life, I am all ears then too.
I have noticed that even though there can be some pain and extra swelling accompanied with exercise, that will give me more energy.
Also, when I eat a large amount of fruits and vegetables, I do notice less swelling. The problem, sometimes I need more food than a massive fruit salad for dinner.
I am trying some supplements of Rutin and Bioflavinoids which contains Grape Seed Extract and Quercetin. These have not been confirmed via research to help patients with Lymphedema but I am willing to try it.
I am hoping I will figure out some effective combinations to help me feel less tired.
If you have any success stories, I am all ears. If you want to vent about how freakin' tired you are and how its a huge downer for your social life, I am all ears then too.
Tuesday, May 25, 2010
Compression Hosiery in Lymphoedema
https://docs.google.com/fileview?id=0BypYxXhTooBwMWYzMzI2ZDQtMTRhMy00ZjMyLTg5ZDUtNTdiMTM1NmZlNDUy&hl=en
International Society of Lymphology
https://docs.google.com/fileview?id=0BypYxXhTooBwN2M1NjJkNmItNzdhOC00YjQwLTg3ZWEtMmNkYjgxZGU0YWJk&hl=en
Monday, May 24, 2010
Reply to Comment by Elaine Sandhurst (UK)
It must be incredibly difficult to deal with this condition in both legs and I could not imagine the frustration and pain that accompanies this.
I do want to add, however, that my leg improved considerably with wrapping. I have much less pain, less swelling, increased ability to exercise, increased self esteem, etc. If my other leg develops Lymphedema, I would try to incorporate wrapping both legs in my life. It would be time consuming and frustrating but it could improve my condition and prevent my legs from worsening. I have experienced the result of not having any treatment on my leg and not wrapping it as I went a year without the correct diagnosis so in order to avoid the pain and extreme swelling I had to deal with for that year, I would wrap both legs.
Also, there are compression garments called sleeves and they make them for the legs now. Although they are so expensive (two would cost anywhere from $200-$400) I think I would try to save up for these items. These sleeves supposedly work just as well as wrapping yet you just have to put them on like pants. That is another possibility, albeit an expensive one.
Again, I want to stress that I do not know what it must be like to have to deal with both legs and I empathize for those that do. That would be a major struggle and would take a very strong individual to deal with the extremity of this condition.
I do want to add, however, that my leg improved considerably with wrapping. I have much less pain, less swelling, increased ability to exercise, increased self esteem, etc. If my other leg develops Lymphedema, I would try to incorporate wrapping both legs in my life. It would be time consuming and frustrating but it could improve my condition and prevent my legs from worsening. I have experienced the result of not having any treatment on my leg and not wrapping it as I went a year without the correct diagnosis so in order to avoid the pain and extreme swelling I had to deal with for that year, I would wrap both legs.
Also, there are compression garments called sleeves and they make them for the legs now. Although they are so expensive (two would cost anywhere from $200-$400) I think I would try to save up for these items. These sleeves supposedly work just as well as wrapping yet you just have to put them on like pants. That is another possibility, albeit an expensive one.
Again, I want to stress that I do not know what it must be like to have to deal with both legs and I empathize for those that do. That would be a major struggle and would take a very strong individual to deal with the extremity of this condition.
International Society of Lymphology
Tuesday, May 18, 2010
Goodbye Dear Friend
I have yet to formally say goodbye to a dear friend of mine: running. Before my lymphedema set in fully, I was running most days of the week and I have to say that I loved running. I felt free when I ran as though nothing could touch me.
When my leg started severely swelling I stopped running because my leg was heavy and it hurt to run. After treatment, I eagerly looked at my doctor and asked him when I could return to running. He told me running was one of the worst things I could do for my leg. He also informed me I could no longer get pedicures--double blow...
Just in case, I asked each of my occupational therapists (I had two) and they both said no.
Since then I have avoided my Nike shorts and brightly colored sports bras and all of my running apparel. I wear my running shoes on "bad days".
So, I wanted to take a moment to tell running goodbye. We had it great while it lasted.
And to all of you who had to give up something because of this condition, I hope you can find something that will replace what you miss.
When my leg started severely swelling I stopped running because my leg was heavy and it hurt to run. After treatment, I eagerly looked at my doctor and asked him when I could return to running. He told me running was one of the worst things I could do for my leg. He also informed me I could no longer get pedicures--double blow...
Just in case, I asked each of my occupational therapists (I had two) and they both said no.
Since then I have avoided my Nike shorts and brightly colored sports bras and all of my running apparel. I wear my running shoes on "bad days".
So, I wanted to take a moment to tell running goodbye. We had it great while it lasted.
And to all of you who had to give up something because of this condition, I hope you can find something that will replace what you miss.
Insurance Frustrations
If you suffer from Lymphedema, you more than likely also suffer from anger and helplessness...against your insurance company. Despite providing my insurance company with plenty of information regarding all of my doctor's visits, diagnosis, medical records, prescriptions, etc., my insurance company without fail either delays payment of legitimate claims that should be processed immediately or they will not cover the claim at all. In fact the most frustrating thing about dealing with this condition is the lack of humanity expressed to me by my insurance company.
Example: For the fourth time now, I purchased compression garments through a company. When I received the invoice, I sent my insurance company the RX, the diagnosis code and the invoice. Despite this being sufficient for all previous claims, they now have an issue and since I did not have the medical equipment companies submit the claim, they may not reimburse me for the $250 worth of compression garments.
I have learned this the hard way time and time again: be psychic when it comes to your insurance. No just kidding, but I am nearly serious. You need to think of all of the questions that are possible. I called and spoke to a rep days before I purchased the compression garments to ensure that they would be covered. I asked his name (also record their name down and date and time spoke to them), how much the insurance covered, how to submit the claim, etc. The rep failed to tell me that the medical equipment companies need to submit the claims or the proper way of submitting the claims. Despite that they have covered my previous claims and did not alert me that it was an improper method of submission, I continued to submit the claims myself.
I am not sure if there is a resolution to this problem with the insurance company. I will continue to push my point and most importantly, speak with a supervisor.
At times, I feel utterly hopeless having this condition. Insurance coverage, hospital visit costs, doctor visit costs have set me back considerably. When we are trying to push through the feelings of despair that our lives have forever changed with this condition, we also have to fight to have our insurance cover the cost of managing the condition. We have met doctors who have been wonderful and those that have blown us off or misdiagnosed. We have been looked at by others differently and we have looked at ourselves differently.
I also try to be positive because crying or punching a wall after I get off the phone with the insurance company does nothing. I guess we just have to keep going. Try to remind ourselves that things will get better, maybe insurance will get better or our condition will improve. If none of those things happen and we are left hopeless, may we be lucky to have the support of our family and friends.
Sometimes it is not enough to take each day as it comes but instead we feel we need to take each minute as it comes. We are luckily not going to die from this condition; we just have to fight to keep going. If you can make it through this, imagine what else you can cope with and overcome.
Example: For the fourth time now, I purchased compression garments through a company. When I received the invoice, I sent my insurance company the RX, the diagnosis code and the invoice. Despite this being sufficient for all previous claims, they now have an issue and since I did not have the medical equipment companies submit the claim, they may not reimburse me for the $250 worth of compression garments.
I have learned this the hard way time and time again: be psychic when it comes to your insurance. No just kidding, but I am nearly serious. You need to think of all of the questions that are possible. I called and spoke to a rep days before I purchased the compression garments to ensure that they would be covered. I asked his name (also record their name down and date and time spoke to them), how much the insurance covered, how to submit the claim, etc. The rep failed to tell me that the medical equipment companies need to submit the claims or the proper way of submitting the claims. Despite that they have covered my previous claims and did not alert me that it was an improper method of submission, I continued to submit the claims myself.
I am not sure if there is a resolution to this problem with the insurance company. I will continue to push my point and most importantly, speak with a supervisor.
At times, I feel utterly hopeless having this condition. Insurance coverage, hospital visit costs, doctor visit costs have set me back considerably. When we are trying to push through the feelings of despair that our lives have forever changed with this condition, we also have to fight to have our insurance cover the cost of managing the condition. We have met doctors who have been wonderful and those that have blown us off or misdiagnosed. We have been looked at by others differently and we have looked at ourselves differently.
I also try to be positive because crying or punching a wall after I get off the phone with the insurance company does nothing. I guess we just have to keep going. Try to remind ourselves that things will get better, maybe insurance will get better or our condition will improve. If none of those things happen and we are left hopeless, may we be lucky to have the support of our family and friends.
Sometimes it is not enough to take each day as it comes but instead we feel we need to take each minute as it comes. We are luckily not going to die from this condition; we just have to fight to keep going. If you can make it through this, imagine what else you can cope with and overcome.
Friday, April 23, 2010
Battle of the Bulge
My leg has improved considerably since I started bandaging my leg but I have these two extremely annoying problem areas that are more stubborn than I am...My knee and ankle are just not fans of getting smaller. My calf and thigh will be practically the same size as my other leg but there are these odd bulges in my knee and ankle. There are lymph nodes in both those areas so possibly that is why those two spots are the worst.
My occupational therapist suggested I get creative with the foam padding and make shapes to help the swelling in the problem areas. It sounds bizarre but it actually works. I have two foam shapes that I place on my knee and ankle prior to wrapping. I place the foam over the stockinette though because it can be a bit irritating on bare skin.
Oddly, this condition requires some creativity. Try out different shapes and ideas with the foam to help with your swelling. Also, there are some stockinettes that have mild compression built into them. They can be a bit too tight on the upper thighs but I wear it over the foam padding and that seems to work also. My knee went from looking like a bagel to being able to see my knee cap! I need to figure out where to get some of these supplies so I will post places once I get more research done on pricing and where to buy.
Lymphatic Research Foundation Walk-a-Thon
The Lymphatic Research Foundation has posted in their March 2010 newsletter information for hosting a Walk-a-Thon. This is such a wonderful idea! They will even send you materials to use as a guide for hosting the event. I think I am going to try to host this in Chicago. And, since it is a Walk-a-Thon, all of us suffering from Lymphedema can participate!
http://www.lymphaticresearch.org/main.php?content=home
Go to March 2010 Newsletter.
http://www.lymphaticresearch.org/main.php?content=home
Go to March 2010 Newsletter.
Not a painful condition?
The doctor that gave me the diagnosis of primary lymphedema stated that the condition was not painful. While I think he is a wonderful doctor and would not have found treatment without him, I still do not agree with him that this is not a painful condition.
This condition is without a doubt uncomfortable. My leg will turn bright red and feel as though it is on fire it is so hot. The swelling causes an ever present feeling of thickness and uncomfortable feeling that never goes away. Then there is the aching feeling and throbbing sensation that I feel at times. In fact, almost every person I have come into contact with have said they do feel pain. I am not saying that I am walking around in excruciating pain all the time, it is not often and usually only accompanies the "bad days" but it is yet another important indication that so much more research needs to be done about this condition.
I am truly grateful for the bandages and they have without a doubt changed my life but I can't help but think while I roll and wrap every single night that there has to be something more that can treat and possibly cure this condition. Wrapping seems archaic compared to the medical advances of our time.
Luckily, there are people out there trying to find answers. Here are some of them:
http://www.lymphaticresearch.org/main.php?content=home
and
http://www.lymphovenous-canada.ca/
and
http://www.u.arizona.edu/~witte/ISL.htm
And that is all I have found now but will continue the search for others working towards treatment options and possibly a solution to lymphedema.
This condition is without a doubt uncomfortable. My leg will turn bright red and feel as though it is on fire it is so hot. The swelling causes an ever present feeling of thickness and uncomfortable feeling that never goes away. Then there is the aching feeling and throbbing sensation that I feel at times. In fact, almost every person I have come into contact with have said they do feel pain. I am not saying that I am walking around in excruciating pain all the time, it is not often and usually only accompanies the "bad days" but it is yet another important indication that so much more research needs to be done about this condition.
I am truly grateful for the bandages and they have without a doubt changed my life but I can't help but think while I roll and wrap every single night that there has to be something more that can treat and possibly cure this condition. Wrapping seems archaic compared to the medical advances of our time.
Luckily, there are people out there trying to find answers. Here are some of them:
http://www.lymphaticresearch.org/main.php?content=home
and
http://www.lymphovenous-canada.ca/
and
http://www.u.arizona.edu/~witte/ISL.htm
And that is all I have found now but will continue the search for others working towards treatment options and possibly a solution to lymphedema.
Subscribe to:
Posts (Atom)