Thursday, December 8, 2011

Weak Immune System

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 :)

Thursday, September 15, 2011

Resource Info on Lymphedema and Exercise

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!

Wednesday, September 14, 2011


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.

Friday, August 19, 2011

Workaholic = More Pain in my Leg

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.

Sunday, August 14, 2011

Staying motivated

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.

Friday, June 10, 2011


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.

Wednesday, May 25, 2011

Complications of Lymphedema

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.

Tuesday, March 15, 2011

Call to Fellow Lymphies: Information on Treatment Globally

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:

Thursday, March 10, 2011

Update on Swelling and Fitness Goals

Alright, I am days away from new and improved compression stockings. My doc moved me up to 40 to 50 for the compression grade. They should be coming in the mail soon and I am anxious to see if they keep my swelling down. I recently bought new wraps and have been better about the manual lymph drainage so I have noticed a phenomenal difference in the mornings, just not at the end of the day.

I also have increased my fitness goals at the gym and am now completing miles in much less time (on the elliptical). I range anywhere from 10.5 minutes to 11.5 minutes per mile. My ultimate goal is to get to 10 minutes per mile so I can knock out 3 miles in 30 minutes and then walk the 4th mile on the treadmill.

And how am I doing with my diet? Well I have completely cut out soda, iced tea etc. I do drink gatorade or powerade after the gym some days when I feel dehydrated. I have also cut out the sugar from my coffee and now use Splenda which really does not ruin the flavor of my coffee! I am still battling my addiction with cookies and candy. One day at a time, right?

Friday, February 25, 2011

A Word from the Wise

I was quickly reminded on Monday of the caution that those who suffer from Lymphedema, or any medical condition for that matter, should take with doctors, physical therapists, medical supply companies, insurance companies etc.

On Monday, I had an appointment at a medical supply company here in Chicago. Now this is a company that has chains all over the place. I have new insurance, Cigna, which is much better than the student insurance I was on before because this is my company’s insurance. Cigna requires that I go to a facility such as Scheck and Siress, a medical supply and prosthetic supply company, to be properly fitted in order for the compression garments to be covered. I am going up to 40 – 50 compression grade because of the severity of the swelling as of recent. Since I have never worn these before, a proper fitting seemed like it could only help. Well I was wrong, very wrong…

I started getting a bad vibe the moment I walked in. The woman at the front desk asked me to fill out paperwork which I was glad to do. She then started going into the payment policy and asked me how much of my deductible I have paid to date which I thought was a bit intrusive but could just be me. Then, she lectured me on how I should have pre-registered. I did this, of course, when I made the appointment. I kindly pointed out that I had no idea how much of my deductible I have paid to date since I just had appointments last week that have yet to be billed to my insurance. I then added that once it goes through my insurance, I would pay any balance but that it must first go through my insurance. She disagreed and said I had to pay today and that if I had pre-registered that none of this would be an issue. I turned beet red as I do whenever I am angry or embarrassed. I let her know that I did, in fact, register when I made the appointment and added that they should be more organized. I really know how to stick it to someone…

You can see how this roundabout conversation progressed from there. I then became very firm and said that they must speak to my insurance before I pay. I then added that no information was given when I made the appointment about the payment policy or costs of being fitted. Then she showed me to the room where I could see the fitter after sitting in the waiting room for half an hour. Therefore, surly front desk lady and I had yet to finish our delightful conversation.

As I sat waiting for the fitter for another 15 minutes, she came back and stated that compression garments need to be ordered so I wouldn’t be paying anyway until they are delivered. Really, huh, so what was the point of that conversation just minutes before?

Then the fitter came in. He seemed nice and began asking me about how I have been managing my Lymphedema and what I currently do to treat the condition. Then he began talking about Elvarex, a Jobst product for compression and said how it would be ideal for me. He brought me a sample of this massively thick and hideous stocking. Call me vain but the entire reason my doctor moved me up to 40 – 50 and not custom is that I can keep some sort of normal lifestyle with clothing not to mention the cost is upwards $300!! Then he realized that Elvarex is for people with vein related conditions. He then measured me and left for about 15 minutes to find me compression stockings. Somehow, he would not get off the topic of custom stockings. The kicker is that my doctor wrote me an Rx that was so specific as to that it had to be opaque and 40 – 50 so I couldn’t even figure out why the fitter was even going there.

After I noted several times that my doctor and I discussed this and we only want to try 40 – 50. The fitter responded that it was difficult to find compression stockings of that grade with my measurements and again said I should get custom stockings. When I prodded further, he had only checked Medi (Mediven). So then I rattled off all of the compression brands that I knew. This sent him off for another 15 minutes.
He came back excited that he had talked to the a service representative at Sigvaris and found me stockings. I was relieved. I would get my stockings and get the heck out of there. I had now been there over an hour. The fitter and I talked measurements, decided on my size and then he stated the price. He quoted $198.00. Then he added that I would need to leave a deposit. Yes, he said that despite what my favorite surly front desk lady had said earlier…

Let me draw your attention to the $198 price of the compression garment. I have been buying compression stockings for over two years now. They cost anywhere from $75 - $150 depending on compression grade, brand, style etc. In fact, the most recent pair that I purchased was Jobst and it cost $85 for 30 – 40 compression grade.
I will stop my rambling (I warned you of my tendency to do this in the very title of my blog) and get to my point.

While there are many companies out there that are in business to suit your needs, there are double the number of companies out there to exploit your needs and your wallet. I knew that price was up there but when I went home and researched further into costs, I found that I could purchase Medi for roughly $100, Juzo costs $75 - $100 and Sigvaris costs $75 to $149.

I also realized that my deductible was a hell of a whole lot higher than I had remembered and with the awesome discounts my insurance gives, I am nowhere near it. So, I would have to pay this out of pocket. Now why would I purchase one stocking for $200 when I can get it elsewhere for half that price?

This is not the first time I have experienced this and it brings me to tears every time. I do not understand why people are so ready to take advantage of those who are in need. I must have compression stockings unless I want the nickname of Elephant Girl. I do have a better job now but I still can’t afford $200 compression stockings. I have to go to my doctor 2-3 times a year for check-up appointments, I have to buy materials for the short stretch bandaging like tape, I have to buy the short stretch bandages, etc. In all, we are talking close to a thousand a year. I can’t afford to be ripped off.

Because so much of our self-esteem and obstacles in life are intertwined with our lymphedema, we are incredibly vulnerable and susceptible to people who think they can cash in on us. Until the world changes and the people in it, that will be something to remember for a lifetime.

Which reminds me of a certain letter I need to send to the corporate offices of Athletico…

Friday, January 14, 2011

Return of Frankenstein

So despite all of the progress in the past year, I fear it has stopped. It’s as though a few weeks ago my leg just decided to stop responding to bandaging and manual lymph drainage. No matter how much drainage I attempt, the darn thing wants to stay the same size. I know that I need new supplies but my knee cap is lost somewhere in a sea of rich protein fluid. It’s big. It aches. And it is seriously hindering clothing options. I actually pulled down my baggy jeans this morning. Those are the very same baggy jeans I wore during the 3 weeks of occupational therapy where I had to wrap my leg every day.

Yesterday, I was at the gym and got 1.5 miles into my workout when it seemed to just crap out on me. Well I wasn’t having it. I like exercising so I forced my leg to 3.5 miles with an elliptical/treadmill combo. Did that hurt? Yes. Did it probably make my leg more swollen? Yes, but I didn’t care.

I wrap it, result: swollen. I massage it, result: swollen. I do light exercise on the elliptical with no impact, result: swollen. I elevate it at night, result: swollen. I wear my compression stocking every day (new ones might I add), result: swollen. Seriously?! It’s not like I am going to stop managing it because I know that is just bottom of the barrel intelligence right there but come on, something has to get better.

I have just finished paying off the majority of my medical bills so I am dreading having to go back to my doctor and then probably back to more physical/occupational therapy and back to more bills, bills bills.

Some days I feel like my life consists of bills and a swollen leg and that’s about it. Argh. That’s all I have to say about that for now. Depressing isn’t it…