Typical Girl: One Girl's Ramblings about Coping with Lymphedema

FIVE MILES!

2012-01-20T14:08:00.001-08:00

I have been meaning to post this all week but I hit a new milestone with my work outs! This may seem like a tiny feat to some but I did a run/jog combo with minimal walking and made it to 5 miles. Since having Lymphedema, I have been able to do a little over 4 miles but never 5 miles. I wanted to share with my readers (all 5 of you!) that I did it!!! I then worked out again the next day and could only do 3 and had to walk, but hey, I did it once so I am sure I can do it again.

Exercise pays off and the more our limbs get conditioned to it and build muscle, the better we will be at pushing ourselves even further. It is difficult as heck and I know it as I cringe through the pain on the treadmill some days but don't give up, it will pay off!!

And please - be careful and don't over do it. I have been working hard at getting to 5 miles for the past year... yes it took me a year to make it to 5 miles from 4... Gradual is key with Lymphedema and always consult your doctor if it is especially painful.

Pain = Gain, In swelling that is...

2012-01-13T13:06:00.000-08:00

Can I just complain about how some weeks this darn leg just kicks me on my butt. I am so exhausted this week I think because the pain in my leg has been so intense. So here's to everyone that still works and deals with a busy week in spite of pain and swelling, I commend you and feel free to complain as well :)

Weak Immune System

2011-12-08T19:00:00.000-08:00

I have never really had the best immune system. I remember when I was a kid, I would get strep throat several times a year with high fevers and always sick for longer than normal periods of time, i.e. it took me much longer to get over being sick. Now that I have Lymphedema, I notice flare ups when I am about to get sick and while I am sick and I wonder what the correlation is between having Lymphedema and a weak immune system is, if any. I know we are more susceptible to infections in the effected limb but what about illness? Are we more prone to get sick or less likely to recover quickly from illness? When I search for information on this, I only get hits back on cellulitus and skin infections. Has anyone experienced the same issues or know of any research on this? My mind starts to churn, maybe it's the researcher in me, but I wonder if certain people are more susceptible to getting Lymphedema because of something in their immune system. Or possibly, Lymphedema weakens the immune system after it develops. If the lymphatics are a system then if part of that system isn't functioning properly, wouldn't it decrease the overall functioning and strength of the lymphatic system? I'm not a doctor at all but maybe someone reading my blog will have some answers. I need to see my doctor for a check up so I will pose these questions to him. I will post more information if I find it :)

Resource Info on Lymphedema and Exercise

2011-09-15T14:13:00.000-07:00

I found a great resource for info on Lymphedema which talks about how specific and individualized exercise should be for those with Lymphedema. Please be sure to check it out!

http://www.lymphedema-therapy.com/lymphedema-exercise.html

Acceptance

2011-09-14T16:22:00.000-07:00

I suppose one thing that I have learned from Lymphedema is that life throws a lot at you and there is not a thing you can do about it. No matter how good you try to be or how hard you work, sometimes things happen that you can't control. No matter how many doctors I saw or how much wrapping and MLD and healthy eating and exercising, I cannot get rid of Lymphedema. It is like so many other things in life. I think one good thing that has come out of Lymphedema is acceptance. Acceptance that there are times that are really awful whether its being diagnosed with a chronic medical condition, a fatal medical condition or simply being hurt by the behavior of others. It's easy to pile on the woe is me's and throw a pity party and I have done it. The type of day where you ask God, why me? And then you're convinced you're the modern day Job. But I think that is life, a lot of disappointments and hardships and a lot of why me's. I just don't think that is all of life and that kind of thinking starts with acceptance. Everyone is entitled to a fantastic pity party... But, big BUT, do it and get it over with and move on to what you can do to make it suck a little bit less. When I realize that I can make choices to make my situation better - it gives me a reason to get up in the morning - it's what keeps me going. Well, that and coffee and sugary treats... Also, helps to have some really great people in your life that love you and are supportive like a great boyfriend, an attentive roomie and parents that listen to you.

I guess that’s my inspirational speech after a horrible day. Should I be one of those motivational speakers or what?!? Lol.

Workaholic = More Pain in my Leg

2011-08-19T13:18:00.000-07:00

My job has been calling for longer hours than I am used to. That means less time for exercise, sleep and more time sitting for long periods of time. Luckily it is Friday and work has calmed down for now. But by now, my leg and hip (and my back) are in quite a bit of pain and more swollen than usual. I tend to have an issue sitting still for long periods of time which is good for Lymphedema but this week of sitting for extended periods has set me back with my leg.

I think at times when stress and work load is high, it is good to stand up for periods and take a break from sitting. Rather than emailing a coworker, get up and go talk to them or stand next to your desk for a bit.

Also, that thing you have your butt on for long periods of time? Your chair...matters. I have been working from home and so sitting on a wooden stool (kitchen table) working 12 hour days and that is part of the reason my leg is more swollen and in pain. I need to invest in a desk and a good work chair for when I work from home.

So, even though life gets busy, there are always little ways to keep your Lymphedema in check. I will hopefully do better myself with that.

Staying motivated

2011-08-14T21:09:00.000-07:00

I feel like life has been handing me a few lemons lately so what did I do last week? I went to the gym twice and sat on my butt and whined the rest of the week. Really healthy and motivating huh? Staying motivated to go to gym or exercise when life gets busy or crappy or even when it doesn't and you just lose motivation is really hard. So how do you keep it up?

I think most people go through this, even athletes; at least that is what I tell myself to make myself feel better... But how do you keep up the motivation when you have that extra obstacle of Lymphedema. It could have been stress on Thursday but my body, leg and hip ached so badly I went straight home and got into bed. I am not sure if going to the gym would have helped but it probably would have helped if I had just gone for a 20 minute walk. I worked late on Friday and instead of going on a run or walk, I just walked to the red box. Saturday I finally got myself together and did 90 minutes of cardio on the treadmill and in the pool. Here I am on Sunday and I don't want to repeat last week but I feel that unmotivated bug creeping back in (because the darn thing bit me today – grill with friends or exercise, well you see which won out).

I wrote my workouts down for the week so I am thinking I will stick to it. Possibly just writing this post will make me stick to it. My Lymphedema isn't going to magically disappear with my butt on the couch. It won't disappear in the gym either, but the swelling and pain will be near nonexistent if I stick with my exercise and healthy eating. New week = better focus on my priorities.

Improvements

2011-06-10T13:48:00.000-07:00

Finally, my leg is back to normal! The swelling has gone back down and I am back in the gym doing 4 miles! I actually read in one of my Lymphedema books that a woman whose swelling became so severe she was going to have to be put in a wheelchair at the age of 43. Instead she went and started back up every exercise she could do, including running. Her Lymphedema improved dramatically. I decided that I would try running again because I loved the freedom I felt running years ago. What was the worst that could happen? My leg gets more swollen? Ha, that's going to happen regardless!

So, I have started out small with 1 - 2 miles on the elliptical and then I go on the treadmill and have a jog/walk combination. I am taking baby steps and can only run 0.2 miles at a time before I need to walk due to pain or lack of strength in the leg to keep going. I am jogging at a pace of 5.5 to 5.7. The crazy thing is that my leg is near normal size at the end of the night when I run. Which is insane but it is working. I am going to continue to challenge myself and maybe one day I can be a runner again. For now, I am going to listen to my body and progress at a slow pace.

Please be careful when incorporating exercise into your life with Lymphedema. Start small and listen to your leg as it reacts to the exercise. If you do too much too fast, your swelling will increase and possibly cause pain. Look at exercise as a form of treatment. It is healthy to get your blood and lymph fluid flowing in that leg and building muscle helps move the fluid BUT go at a pace right for you.

Complications of Lymphedema

2011-05-25T19:32:00.000-07:00

As I have said before, there are good days and bad with Lymphedema. On occasion, there are not just bad days but bad weeks. It becomes frustrating and then disappointing as you feel attacked by the Lymphedema-as though it is taking over all aspects of your life due to the both physical and mental problems it can cause.

I felt like I was getting back to the old me before the Lymphedema about a few weeks ago. I was doing 4 miles at the gym on the elliptical and walking on the treadmill and I was weight lifting. I was at the gym 4 times a week and loved it. My leg started to feel much better. Then what seemed to come out of nowhere, my hip, abdomen, and thigh became incredibly swollen that sitting was painful and I was walking with a limp again. The Lymphedema seemed to take over my life last week. Pain set in and by Friday, I was exhausted from the pain that could not be alleviated with IB Profen. I wasn't myself because I was so tired and in so much pain. I was irritable and no matter what I did; elevate, MLD, etc. the pain and swelling would not minimize.

Today, I feel better but went to the doctor to get checked out. I may have an infection but it may be something else so I am getting prepared for another witch hunt as I am referred form doctor to doctor as each scratch their head at my condition. It took nearly a year to get a correct diagnosis for Lymphedema but now that I have the diagnosis, when a complication arises, they still don't know. There is just too much that doctors don't know about Lymphedema and the complications that occur as a result of the condition.

I try to stay optimistic about it all because honestly there is no choice, I cannot choose to wake up tomorrow and not have Lymphedema. The swelling, discomfort, pain, complications, tiredness, limited physical ability etc. will be with me for a lifetime. So I could either whine about it or just ignore it and that usually works. Usually. But as I felt worthless over the weekend, tired and in pain, unable to do the things I usually do on weekends, I spent the time lying in bed and on the couch and I absolutely hate wasting my weekends like that.

I am not even sure what is the point of this post other than to say how frustrating and upsetting it is to have this condition and that sometimes are harder than others. I am just hoping that whatever is wrong with me will improve soon so I can get back to feeling like myself again.

Call to Fellow Lymphies: Information on Treatment Globally

2011-03-15T13:22:00.000-07:00

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

Update on Swelling and Fitness Goals

2011-03-10T13:52:00.000-08:00

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?

A Word from the Wise

2011-02-25T10:27:00.001-08:00

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…

Return of Frankenstein

2011-01-14T13:50:00.000-08:00

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…

Bye bye skinnies

2010-12-29T12:27:00.000-08:00

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.

Fitness goals

2010-12-29T11:29:00.000-08:00

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.

Some Time Away

2010-12-29T09:20:00.000-08:00

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.

Walking and Saving

2010-08-30T10:55:00.000-07:00

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 :)

More Insurance Woes

2010-08-24T14:38:00.000-07:00

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.

My Story

2010-08-06T14:33:00.000-07:00

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.

Vitamins and Exercise

2010-07-09T14:11:00.000-07:00

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.

Insurance Issues

2010-06-22T15:14:00.000-07:00

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.

Lymphedema and Tiredness

2010-06-22T15:05:00.000-07:00

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.

Compression Hosiery in Lymphoedema

2010-05-25T12:50:00.000-07:00

https://docs.google.com/fileview?id=0BypYxXhTooBwMWYzMzI2ZDQtMTRhMy00ZjMyLTg5ZDUtNTdiMTM1NmZlNDUy&hl=en

International Society of Lymphology

2010-05-25T12:31:00.000-07:00

https://docs.google.com/fileview?id=0BypYxXhTooBwN2M1NjJkNmItNzdhOC00YjQwLTg3ZWEtMmNkYjgxZGU0YWJk&hl=en

Reply to Comment by Elaine Sandhurst (UK)

2010-05-24T13:02:00.001-07:00

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.

International Society of Lymphology

2010-05-24T12:53:00.000-07:00

This is a great article on treatment, research and directions in the treatment of lymphedema.

http://www.u.arizona.edu/~witte/contents/2009.42.2.concensus.pdf

Goodbye Dear Friend

2010-05-18T15:15:00.001-07:00

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.

Insurance Frustrations

2010-05-18T14:49:00.001-07:00

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.

Battle of the Bulge

2010-04-23T17:19:00.000-07:00

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

2010-04-23T07:41:00.000-07:00

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.

Not a painful condition?

2010-04-23T07:26:00.000-07:00

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.

The Inevitable Stocking Crisis

2010-04-20T10:49:00.000-07:00

They are thick...

We have to wear them...

They fringe on hideous...

They are compression stockings!!!

As someone who suffers from lymphedema, I have two options; 1) Wear the compression stockings and face the odd stares and questions like, "what is on your foot?" or 2) not wear stockings and become Elephantitis woman. Basically, I have only one option. While the compression stocking companies have vamped up their product now making them softer, in various colors and sheer, one still cannot get away from the fact that they are still very obvious and not all that attractive.

The winter time presents few problems with wearing the stockings since they are rarely in view and keep you warmer. I bought a black pair of Jobst stockings and they actually are attractive enough to wear with dresses in the winter and look very similar to regular stockings. If the color is off just throw normal, light weight stockings over them.

With the summer months approaching, so does the question, "what the heck do I wear?"

If you have fair skin like I do then you have realized that the beige stockings that the companies sell in no way resemble your skin color. Yes they are obvious but there are ways around it.

One Word (well two): Maxi dresses. You can find them pretty cheap at Target and many boutiques carry them for not too badly priced either.

Next, if you want to wear other items of clothing, go for it. I really love my leggings and I just got a flowy tank from H&M for $9 which I was largely proud of. So I said, who cares, threw on my leggings over my compression stocking. I was having a good day so my leg wasn't very swollen. I walked all around Lincoln Park, Chicago and went shoe shopping. Did many women stop and stare at my leg? Yes they did. If it went on beyond the time frame for pure curiosity I just stared back. They look like the jerk staring at someone with an obvious disability... Most people are not going to ask you what is wrong with your leg or what you are wearing because they know it is rude or none of their business. Stares will probably replace the questions so be prepared for them. I honestly believe that most people are just wondering what it is and then if they notice the leg is swollen, they are probably just curious as to what condition we have.

I have days wear I still hide my leg in baggy pants and sneakers and then others, I brave the stares and wear whatever I want.

I am nowhere near brave enough to wear the stockings with some shorts...mostly because that would be a very weird outfit.

My point, wear what makes you feel good and ignore the stares.

Welcome

2010-02-12T14:22:00.000-08:00

I am starting this blog as a way to cope with my diagnosis of Lymphedema as well as to reach out to those affected by the condition or to those who know someone who is affected by the condition.

I have titled it "Typical Girl" because I have had a difficult time feeling like a normal twenty something girl. It is with hope that through self management, treatment, spreading the word about the condition and reaching out to those like me that I will feel like a typical girl once more.

I will have postings talking about what to expect with Lymphedema, emotional reactions, insurance, treatment, fashion and resources. Some days are good days and some have left me not wanting to leave my apartment but I will talk about it all and share others to comment and talk about their experiences as well.

I also want to focus on fashion quite a bit because I am not ready to live my life in sweatpants and sneakers! Self esteem is a huge factor in dealing with this condition and wearing well fitted clothes that accommodate the infected limb and make you feel attractive are important factors in maintaining a healthy self image.

Read on!

Feel free to leave comments and advice.

Lindsay

First Fashion Post!

2010-02-12T13:03:00.000-08:00

So my fashionable wardrobe seriously declined as my leg became more swollen. I had to say goodbye to shorts, skirts, skinny jeans, my three inch heels...

The intensive period of therapy which consists of wearing the bandages for 23 hours a day caused some freak outs. I had to rummage through my clothes to find a baggy pair of jeans and shoes that fit my bandaged foot. I had some great old vans laying around which fit perfectly. I did, however, feel that I was staring at a 16 years old version of myself in the skater girl phase...

The intensive period only lasted three weeks and then I was back to my compression stockings during the day again. I knew during that time that I was going to have to work on my self esteem and focus not on my abnormalities but what I do have. The more I try to find clothing that suits my leg rather than having my leg fit into fashionable clothing trends, the better off I have been. To be honest, I think I have looked my best as of recent because I am conscious of the comfort of my leg and I have more confidence in my features that do not revolve around my leg.

I have started a system for deciding on my outfits. I am one of those uber anal list makers. I have a list for everything...So I decided I would make a list of possible clothing choices for my date with my boyfriend and drinks with friends after. I made two columns, one for if my leg is having a good day and one for a bad leg day. That way when I got home and couldn't get my skinny jeans on because my leg is too swollen, I would still have another outfit to throw on. This actually works with my self esteem issues because if I have a cute backup outfit that allows for my leg swelling, I don't give up and decide to hide in my apartment.

My best advice is to make yourself feel good about what you are wearing. Just because we have lymphedema doesn't mean we have to put a sign on that says freak. If your leg is swollen, opt for a cute top and wide trouser pants with flats.

More posts to come about possible fashion ideas.

Embracing the Inner Mummy: Information on Bandaging

2010-02-12T12:54:00.000-08:00

This post will review the stages of intensive treatment. This is such an important part of getting better. I was seeing a physical therapist for two months who did not do any of the necessary treatment steps for Lymphedema. The result of her lack of knowledge about the condition cost me hundreds more on top of my already mounting medical bills, caused my leg to worsen to the point that walking was incredibly difficult and painful. You must educate yourself about the condition so that you know whether you are receiving the correct treatment. Verify their background also!

There are three layers of bandages:

Stockinette
Foam and or padding
Bandages

The bandaging must be taught by an occupation or physical therapist because they will know the correct way to wrap your leg and teach you as well.

I had two amazing occupational therapists that wrapped my leg and taught me how to do it myself.

First, I put on the stockinette so that the short stretch bandages do not come in direct contact with my skin. Then I put on my foam padding in my problem areas (this will be a later post). Then I start at my foot with the smallest bandage and work my way up to my hip. I wear 5 to 6 short stretch bandages. I have to wrap my leg every single night and perform the manual lymph drainage massage. The entire process takes about 45 minutes to an hour and is and will always be a pain in the butt. The reward: your affected limb smaller and less painful. I sleep in this every single night.

The first several weeks of wearing the bandages to bed will be rough. Sleep will be scarce because it is heavy and hot and you can barely bend your leg. It becomes typical to you after a while and soon not an issue. Also, when you are starting to learn how to wrap, there will be the nights where you were a bit too overzealous during wrapping and wrapped your leg a bit too tight. You will wake up in the middle of the night and not be able to feel your foot. This is not good. Take it off immediately. I suggest trying to rewrap which is not fun at 3 in the morning when you have to get up in a few hours BUT it will help your leg so it is worth it.

In short: wrapping is obnoxious and tedious and time consuming but your leg (or arm) will get better because of it and will be less swollen. Stick with it, it will pay off.

IMPORTANT: DO NOT USE THE METAL CLASPS THAT COME WITH THE BANDAGES, THEY CAN PUNCTURE YOUR SKIN AND CAUSE AN INFECTION!!!

I will post some pictures of my mummified leg shortly!

Helpful Resources

2010-02-12T12:53:00.000-08:00

By far, the best resource I have found to date was this book:
Living Well with Lymphedema
http://www.lymphnotes.com/pub.php/id/20/

Extremely Helpful Websites:
http://www.lymphnotes.com/
http://www.lymphnet.org/

Places to buy compression stockings:
http://www.discountsurgical.com/

Foundations working toward making a difference:
The Lymphatic Research Foundation

What is Lymphedema?

2010-02-12T12:50:00.000-08:00

Lymphedema

What is lymphedema?

Lymphedema occurs when a clear fluid known as lymphatic fluid builds up in the soft tissues of your body, usually in an arm or leg. The lymphatic system consists of lymph vessels and lymph nodes that run through your body. Lymph vessels collect a fluid that is made up of protein, water, fats, and wastes from the cells of the body. Lymph vessels carry this fluid to your lymph nodes. Lymph nodes filter waste materials and foreign products, and then return the fluid to your blood. If your vessels or nodes become damaged or are missing, the lymph fluid cannot move freely through the system. The fluids can then build up and cause swelling, known as lymphedema, in the affected arms or legs.

There are two types of lymphedema:

• Inherited lymphedema, sometimes called primary lymphedema, in which you are born lacking lymph vessels and nodes. The swelling usually appears during your adolescence and affects your foot or calf. A rare form of primary lymphedema develops in infancy and is called Milroy’s disease; and

• Acquired lymphedema, sometimes called secondary lymphedema, in which an injury to your lymphatic system causes lymphedema. It is much more common than primary lymphedema.

Some people develop chronic lymphedema, which can last for the rest of their lives. Chronic lymphedema can be difficult to treat. Swollen limbs may become vulnerable to infection. Even a minor injury to the skin, such as a cut, scratch, insect bite, or even athlete’s foot between the toes can cause a severe infection, which physicians call lymphangitis. Lymphangitis affects the connective tissue under the skin. Repeated infections can cause scarring that makes the tissue vulnerable to more swelling and infection. This leads to the tissue hardening, called fibrosis, which is characteristic of advanced chronic lymphedema.
What are the symptoms?

If you have lymphedema, you may not develop symptoms immediately. Sometimes symptoms occur 15 or more years following an injury to your lymphatic system. When symptoms eventually occur, they can include:

• Aching, weakness, redness, heaviness, or tightness in one of your limbs;
• Less flexibility in your wrist or ankle; and
• Tight-fitting rings or shoes.

What causes lymphedema?

The most common causes of secondary lymphedema are surgery or radiation treatment for certain types of cancer, such as breast and testicular cancers. Other causes of lymphedema include surgery on the blood vessels in your limbs or other surgical procedures, like liposuction, as well as burns.

How is lymphedema treated?

If you are at risk for developing lymphedema, you can act to prevent it. Initially, if you have mild lymphedema, you can act to keep the condition from worsening. You can take the following precautions to prevent or minimize symptoms:
• Clean your affected limb regularly. Remember to dry it thoroughly and apply lotion;
• Wear gloves while gardening and cooking;
• If you shave the affected area, use an electric razor;
• Don't go barefoot;
• Do not cross your legs when you sit; and
• Do not carry a handbag with your affected arm.

In addition, if you are at risk for lymphedema, avoid having injections and blood pressure readings performed on your affected limb. You can also wear a special bracelet or necklace to notify medical personnel of your risk for lymphedema and the risk for complications, such as infection.

Physicians have not agreed about how to best treat chronic lymphedema. Some people have benefited from manual lymphatic drainage. This treatment uses massage to stimulate your weakened lymphatic system. Other treatment methods include special exercises that you can do while wearing compression stockings or bandages, and the use of external pumps to aid the movement of fluid through your body. A treatment that combines these treatments with lifestyle changes is called complex decongestive therapy.

Medication cannot cure lymphedema. However, your physician may prescribe medications to treat associated conditions. For example, antibiotics play an important role in combating infections that can worsen lymphedema.

Treating your lymphedema requires your participation. Because lymphedema can be very painful, you may benefit from individual counseling. You can also join support groups that provide practical advice as well as social and emotional support.

Source: Vascular Web
http://www.vascularweb.org/patients/NorthPoint/Lymphedema.html