Wednesday, December 29, 2010

Bye bye skinnies

Lately, my leg has been bigger. I have a feeling it’s a mixture of increased stress, less sleep, increased exercise, and I need to replace my wraps. With the bigger leg, I said bye bye to my skinny jeans and to my leggings much of the time too. So here I am again at the question that has baffled women for ages, "what should I wear?"

With the recession, I am guessing you are like me and have to be a budget shopper. Depending on how bad your lymphedema is, I think you can still look great when you're going out with your friends even when your leg acts up. Don't do what I used to do...that is, begin a full on attack against your closet--throwing your clothes all over the floor and bed and then surrendering with a collapse on the ground defeated.

We (lymphies) should stay away from heels most of the time. I do, however, think if you have kitten heels and aren’t running all over the city that you should wear them for the office or out with friends for a few hours. Please stay away from 3 to 5 inch heels. We all know we have trouble balancing and walking as it is without adding extra inches that could really hurt us.

So my favorite 4 items to have for a fail-safe outfit:

1. Kitten heels
2. Boot cut jeans
3. Belt
4. Slimming black top or any color really

The heels. Bandalino. I am sure other brands are good but I have never found another shoe that is affordable and doesn’t kill my feet. I think the kitten heel is about 1 inch-maybe 1.5. Its small but it’s just enough to give you a nice dressed up look. The trick is, don’t ever pay more than $30 for these shoes. On occasion they are $40. If you go to a place like DSW or Off Broadway, you can usually get them majorly discounted. The great thing is that these shoes last. My first pair I got for working retail and that pair lasted all the way from retail and foot fatness to job interviews to going out with friends. I think I have had them about 2.5 years and they still look good. I just got my second pair for the holidays. Even with my swollen foot, they didn’t hurt. I didn’t have to go up a size so it actually fits both feet and they look great.

The jeans. H&M. They have all different sizes and all lengths. I got the boot cut ones and they fit great. They are $40 not on sale so they really aren’t too badly priced compared to all those fancy and overprices department store jeans.

The belt. I got this as part of my uniform for retail but any belt will do. I would stick to the basic colors like black or brown so it can go with more. Mine is a patent leather wide belt that I wear higher on my waist to make my waist appear thinner. It works!

The top. Really any top will do. A flowy silk one, a dressier t shirt, a flowy tank, etc. Any color will do too. Well stay away from yellow and black, you don’t want to look like a bumble bee.

Add accessories. Add a necklace, bracelets, earrings etc. You don’t have to go wild. You could wear a pair of bright, funky earrings and then nothing else. Just add a little something to the outfit with jewelry and it will look nice.

So that is my opinion on the fail-safe outfit for us lymphies.

Fitness goals

With a new job comes a hell of a lot of stress. Just kidding—sort of. With the new job I landed, I was finally able to afford a gym membership. Did it have the miraculous result on my leg I thought it would have? No, but the rest of me is looking better!
I do think that exercise is one of the most important ways to manage lymphedema. It is difficult though, that is for sure. If you read my older posts, you’d see that I used to be a runner so I used to love exercise. If you met me, you’d know how neurotic I am and therefore, how imperative it is that I use that use exercise to take me down a few notches…

Things have changed though since my days of running. I have this extra weight from my leg that I didn’t have before and it can make exercising really difficult. I honestly think that if I put too much pressure on myself or scheduled overly specific goals for my exercise I would fail horribly and disappoint myself. I never know how my leg will be on a given day. Some days my leg doesn’t bother me at all while others I can only go 3.5 mph on the treadmill. Then other times, I get a little too excited and then overdo it which can be painful and increase the swelling.

I think setting realistic goals for exercise is extremely important. You want goals but with lymphedema, you have to know when to modify those goals. I usually go for 3-4 miles with a combination of the elliptical and the treadmill. On days that my leg feels good, I try to beat my typical time so that I can complete more miles in a shorter time frame. When my leg is not feeling so good, I will keep my time on the elliptical short with maybe only a mile on there and then I will move to the treadmill and do another mile or two on their depending on my leg. I will get this pain in my calf, it’s not intense but more like a stiffness that is incredibly uncomfortable. I always lower my speed and then try to walk it off. If that doesn’t work, I try to get to 2 to 2.5 miles and then I call it quits.

Today, my leg is aching and massive because I flew from Florida last night to Chicago and my leg isn’t taking the pressure change so well. I can actually feel the heat of my foot from the outside of my boot. I am going to the gym today because I enjoyed the holiday food and cookies a bit too much. I would love to get in there and have a hard core workout but that’s not going to happen because walking to work was a challenge today. So I am going to do my mile on the elliptical and then get on the treadmill. If my leg is feeling good, I will aim for 2 more miles on the treadmill at a moderate pace.

My point in all this babbling is that it’s good to set goals but for people with lymphedema, you have to understand your body’s limitations and modify your goals accordingly.

I have a few goals for myself with exercise:

1. Increase energy level
2. Build up enough strength to start doing yoga again without really embarrassing myself…
3. Tone my body up so I can wear my speedo without scarring the other members
4. Be healthy

One note about exercising with lymphedema. I think that we are all vulnerable to exhaustion because of our condition. If you try too much too fast, you will wear yourself down. Take it easy, the energy will come with time and the more you can accomplish at the gym or whatever your fitness goals are.

My next big to-do is to cut back on sugar. And I really love sugar! I will have more posts about my sugar withdrawals as I start to cut it (well lower it, let’s not get crazy…) from my diet.

Some Time Away

I'd like to say that I haven't devoted much time to my blog because I got a new job or because my ancient computer finally died but I think the real reason that I haven't posted is because sometimes I like to ignore the fact that I have lymphedema. I don't want to think about it or talk about it despite the daily reminder that is, well, my leg.

I was avoiding my 'medical condition' wonderfully (that is, I continued to care for my leg but just pretended I was normal) when I found my medical reports from the surgery I had when I was in my early twenties. That's when a very uneducated doctor decided to cut me open in my lymph node area. The reason was that swelling had begun in my thigh and the lymph nodes in that area were inflamed. This is up for debate but this is either when the doctor gave me secondary lymphedema or worsened my primary lymphedema. Who knows who cares because one thing is for sure—this doctor screwed up my leg. As I was saying, I found the medical report when I went to visit my family in Florida for the holidays. It said that the patient (me) appeared to understand the possible implications of the surgery. One such possible implication was deformity. How vague but nonetheless I burst into tears. I don't recall hearing any statistics on the likelihood of developing lymphedema which is of course a sort of deformity. Were they referring to the tiny scar as a deformity? All I know is that this doctor did not discuss lymphedema with me. Either he was not aware of the condition or didn't fully understand the consequences of disrupting a young girl's (or anyone's) lymphatic system.

And then I cried my eyes out for a while. Thinking about how this will impact me for the rest of my life. I have always wanted to honeymoon in Fiji, somewhere tropical, or on a cruise. Uh, scratch that. I imagine being active during pregnancy-wearing cute pregnancy clothes, going to yoga with other pregnant Moms. Argh, scratch that-I can't even do yoga now because the darn leg is about as flexible as a pile of cement and most likely, I will be on bed rest due to a gargantuan leg. Then I imagined juggling work, babies, and lymphedema. Wrap every night. Physical therapy throughout my lifetime and especially when pregnant. Then I imagine just wanting to wear a dress and more tears poured out.

I may have been avoiding some of these thoughts for a while and then they just broke through like a tsunami.

Luckily, things seemed better in the morning. I know that none of this is "ideal" but we cope-we adapt. Wrapping my leg every night seemed like a torture sentence when my occupational therapists first told me now it’s just annoying but I still do it.

We could all throw our arms up, fall to the ground and stay there-hopeless. But do you know what would happen? You'd get evicted because you didn't pay your rent because you didn't work to make money and then you'd be out on the street alone. Why alone? Because you let your limb(s) dictate the quality of your relationships with others. Instead of braving the world, you sat alone inside with your limb(s) and from experience I can tell you, it’s not all that great of a companion. And you know what would happen next? Well then your health would deteriorate because you couldn't take care of yourself and then life would be gone.

So, my point, get off the floor. Go to work. Pay your bills. Go on dates. Hang out with friends. Get married (hopefully all of us, regardless of sexual orientation can do this someday). Go on honeymoon in Fiji even with a big leg. Have kids. Have grandkids. Take care of yourself and leave this world old and wrinkled.

Monday, August 30, 2010

Walking and Saving

I have recently taken my exercise up a notch. I live about a mile and a half from work which is nice and convenient. It is far enough away for me to take public transportation. I used to hate getting to work "icky" with the heat and humidity but I have decided that in spite of feeling icky, I would walk to and from work. I just bring my deodorant, a fragrance and a fresh shirt to change into.

So this was my walking schedule last week:

Monday: 1.5 miles(only walked home from work)
Tuesday: 3 miles
Wednesday: 3 miles
Thursday: 3 miles
Friday: 4 miles
-Walked to and from work and walked about a mile to get lunch
Saturday (yes I had to work...): 3 miles

Total: 17.5

My goal this week is to walk 20 miles!

Now onto my saving money:

Before, I was only walking home but taking the train to work each morning so I spent $2.25 each day on the train. Walking to work this week saves me $11.25 and saves $45 per month. In two months time, I have saved up enough to buy new compression stockings. Woohoo right?

I realize that not everyone is as close to work as I am and public transportation or driving is a must. If you have an hour lunch break, you could take a 20-30 minute walk and save the other time to eat. Then when you get home, all you have to put in is another 20-30 minutes of walking and then bam, you're done for the day.

Other ways to add in exercise throughout the day:
-Walk up the stairs rather than take the elevator
-Park in the farthest parking spot possible so you have to walk
-If there is a lunch place right next to your office, avoid it, go for the one about .5 miles away then you have walked a mile, cleared your head and gotten some Vitamin D.

That is all of my words of wisdom for the day :)

Tuesday, August 24, 2010

More Insurance Woes

After being with United Health Care Student Resources for two years and receiving reimbursement for numerous compression stockings, I received a letter yesterday stating that these payments were made in error. That is, the several individuals I spoke with, including supervisors, either lied that I had a $2,000 coverage amount for compression hosiery or they are all stupid. Either way, this reflects incredibly poorly on United Health Care and their sub part, Student Resources. I plan on posting their letter to me and my response to their letter. I also plan on raising some serious hell. This is disgusting that a medically required item, such as a compression stocking, is not covered under this policy.

I am planning a full on attack. I am going to write a formal complaint to United Health Care. I also plan on writing a letter of complaint to the Attorney General Lisa Madigan. In addition, the NAIC (National Association of Insurance Commissioners) and The Office of Consumer Health Insurance of Illinois will also be hearing from me!

I will also forward all of these letters of complaints to Loyola University where I went to school and which was a university health plan.

I would also like to stress to the Lymphedema community that United Health Care is not friendly to those of us who have been diagnosed. I have had refusal of payment on a number of claims that should have been covered. Their company's practices are dishonest and corrupt. If you are diagnosed with Lymphedema, you will be forced to pay more out of pocket than the policy or customer service department states. The policy is overly general and leaves too much room for limitations and denials.

If you have any information on who else I should contact or any other information that may help with this situation, I would greatly appreciate it.

Friday, August 6, 2010

My Story

I still have more to add and edit of this but here it is:

At the start of 2009, I was working retail full time to support myself through graduate school. It was at the end of January and the start of February that the swelling in my leg began. I don’t remember where it started swelling in my leg first. I had a required outfit I wore at the one retail job which consisted of high heels. This is probably what aggravated my condition, being on my feet for long periods of time in high heels.

I called the school clinic as the pain and swelling worsened at the beginning of March 2009. The nurse asked me to go straight to the ER in fear that I had a blood clot. I listened to her and after work, I went to the hospital. I sat at the hospital for hours as they did ultra sounds, blood tests, and I think an MRI. The ER doctor came to me when he had the results and said my leg was fine, there was nothing wrong with it. I looked down at my swollen leg and looked back up at him and told him my leg was obviously not normal and something was wrong with it. The ER doctor was rude and dismissive. I left the ER hopeless and angry. Something was wrong with me and I knew it even if this doctor didn’t.

I sought out a doctor at Weiss Hospital at the end of March in 2009. His specialty was vascular surgery. After many tests, he diagnosed me with May-Thurner Syndrome, a condition of the veins. I was scheduled for surgery in May and was going to have a stint put in my iliac vein. The day of the surgery, the doctor changed his mind and instead did an angioplasty. After the surgery and several days of rest and off my feet, my leg had gone down to near normal size. I remember it was the weekend of the fourth when I was so excited to wear a dress out. I thought I was fixed. Not long after I returned to work, the swelling returned as well. Luckily, in June, I landed an office job and was able to get off my feet. The swelling, however, continued to worsen.

The medical bills went through insurance and now I was receiving the bills. I had accumulated thousands in medical expenses. The out of pocket expenses escalated. My anesthesia alone for the surgery was $740 out of pocket. The surgery ended up being $860 out of pocket which I have just now paid down to $340 as of July 2010. The ER visit was about $200. The tests at Weiss prior to the surgery came to around $400. I had made not even $15,000 in 2009 working for near minimum wage in retail. Even when I landed the office jobs, they were not quite full time. I was drowning in debt by this point. The stress was overwhelming me. My leg only grew and grew. Due to the medical expenses, I did not seek more medical treatment until November 2009.

In the five months that I did not seek any medical help, my leg worsened further. Walking was painful. Sitting was painful. My clothes no longer fit. Shoes barely fit on my left foot. I walked with a limp and felt extremely self conscious about my leg. I viewed myself so critically. I was tired all of the time. My leg drained me. The medical expenses were draining me.

In November, I could not take it anymore and sought a second opinion from another vascular surgeon at Northwestern. I brought all of my medical records for the doctor to review. After looking at my medical records and talking with me for 5 minutes, he diagnosed me with Lymphedema. He told me this was a lifelong, chronic medical condition. I was in shock. I asked him if there was a cure and he said there was not. He then told me to go see a physical therapist that specializes in Lymphedema. He was cold and short and left the room within ten minutes. He was not at all fazed by the fact that he had just told me my life will forever be different. He didn’t explain to me what Lymphedema is. He did not explain what to expect in physical therapy. I left the office in tears.

The doctor was the first blow. The second blow was when my insurance informed me they would not cover the cost of the doctor visit because it was a second opinion. The ten minutes in the awful doctor’s office cost me $591.00. Things were not looking up and would get worse before they improved.

I looked through my health insurance for in network physical therapists. Ahtletico was in network and therefore I called and to see if they had a Lymphedema trained physical therapist. They said they did so I made an appointment. This was December 2009.

I did not know what to expect with the physical therapy and when I met my physical therapist, Beth, I thought things would get better. She was incredibly sweet and I thought this would be the help that I needed. My sessions consisted of exercises to build muscle in my leg and a brief manual lymph drainage massage. In the second or third session, Beth hooked me up to a machine that caused muscle spasms. She said this would help the lymph flow. For 20-30 minutes, I sat hooked up to this machine that made my leg spasm uncontrollably. It was incredibly uncomfortable. Beth gave me one short stretch bandage and said this bandage would help also. She had me put it directly on my skin and secure it with the metal clasps. Beth had given me no time frame for treatment. I wore my compression stockings every day but was not yet seeing a difference in my leg.

I went to visit my family in Florida at the end of December and part of January. I was wearing my compression stockings every day. When I returned from Florida, I had two more appointments which put me at 12 sessions with Beth. I started noticing a difference with my leg, but not the kind of difference I was hoping for.

Mid January, my leg and foot had become more swollen than ever before. My foot was so swollen, my shoes barely fit on it and I was forced to wear my sneakers. I had to stay home from work for several days because I could not walk on my foot due to the pain.

I knew something was wrong and that I needed help because whatever Beth was doing was not right. I bought a book written by specialists in Lymphedema, Living Well with Lymphedema. I learned from that book what therapy should have consisted of. I was supposed to learn how to give myself manual lymph drainage, how to bandage my legs, etc.

I researched and researched and found a doctor listed on a Lymphedema website, Dr. Joseph Feldman with North Shore University Health System. I called my school clinic and explained to them my situation. They had me come in to for an appointment. This incredibly kind nurse helped me get a referral to see the new doctor. I then made an appointment with Dr. Feldman and he was wonderful. He was incredibly knowledgeable about Lymphedema and referred me to have occupational therapy at the rehabilitation center. He explained what Beth had done wrong. She had obviously not been trained in Lymphedema despite stating that she was. The machine may have worsened my condition.

I then started occupational therapy with two women in February. The first session they told me exactly what to expect; I was given an exact time frame 2 visits per week for 2-3 weeks. They taught me how to give myself a lymph drainage massage, to bandage my legs, how to care for my leg, what to avoid, etc. On the first visit, I was shown what bandaging was. This was a bit traumatic. I was told that during this intensive treatment, I was to wear my bandages every day. My bandaging consisted of 3 layers. The first layer was a stockinette which went on the bottom so that the short stretch bandages did not touch my skin. The second layer was a foam padding layer and the third layer was the short stretch bandages. I had five short stretch bandages to cover my entire left leg.

I had to learn how to do this on my own because I was to wear it every day for the next three weeks. After the three weeks, I was to wrap my leg every night. Now that I am so accustomed to wrapping, it isn’t a big deal. I have gotten used to it as part of my schedule. At the time though, I had to wear baggy pants to fit the bandaging and sneakers also. I felt ugly. I was relieved to find treatment but the treatment was overwhelming. Looking back, I was very depressed at the time. I was extremely self conscious and I remember crying often. My life was going to be different; there was no doubt about that.

The therapy included all of the bandages and supplies. When the three weeks were over, I had all of the resources I needed to manage this condition on my own. I was very grateful and still am for those two women who were my occupational therapists. They gave me strength to deal with this. They would listen to my worries about clothes and even shaving. Everything becomes an issue when you have Lymphedema, even shaving…

So here I am, now six months later. The pain in my leg has decreased considerably, I wrap my leg every night which keeps swelling down and I give myself the lymph drainage massage. My leg will probably never look like my right leg. I haven’t seen my inner ankle bone in my left foot in over a year! My leg does seem to get better with exercise and healthy eating. Although, I was told to never go back to running because it will worsen swelling and my condition. I wear my compression stocking every day and wrap my leg each night. It takes about 30 minutes to wrap my leg each night. There have been nights that I stay out until 2 or 3 in the morning but I always wrap my leg when I get home. I actually feel better once my leg is wrapped because I do not feel the tightness and swelling when it is wrapped.

Friday, July 9, 2010

Vitamins and Exercise

One of the nice things about facebook is meeting people you would never normally meet. When I was diagnosed, I wanted to find others out there like me. Luckily, through facebook, I met so many amazing girls dealing with Lymphedema too. We started trading advice and info to one another about exercise, vitamins, clothing, etc.

One girl recommended I try Grape Seed Extract. I wanted to do some research first and found out that certain supplements like the grape seed extract may help those of us with lymphedema.These supplements are called bioflavinoids. There are many out there. I am currently taking Rutin. I have also ready that Butcher's Broom works too. Here is some info:

The FDA has not confirmed whether this stuff works and it may not work in some or it may be in my head, lol. Since I have started taking Rutin, I have also started walking more and weight lifting so it could be the exercise that has improved my leg swelling but it has improved. I thought it was worth a try and thought I would share this information.

I also have found a wonderful machine for my lymphedema. Its the elliptical machine. It is great because there is absolutely no impact on my legs and hips. It feels like running!

It could be the wrapping but in the last few weeks since I have increased my exercise (and bit my lip and carried on when it felt painful), my leg has decreased in pain and swelling. I actually went to a pool last weekend and was walking around in my bathing suit because I was not embarrassed by my leg.

If you feel like you can, try to increase your exercise a little and you will notice a difference I think. If you try too much too fast, it will be painful and your leg will get swollen. Try starting with a one mile walk and then increase it gradually.

Tuesday, June 22, 2010

Insurance Issues

I am feeling stressed over my medical claims not being covered. Thousands upon thousands have been accumulated in medical bills. I really wish I did not have to pay any money to Athletico. I feel bitter that the physical therapist lied to me about her qualifications. Hundreds later she actually worsened my condition. There is a physical therapy board that I plan on writing to about the treatment (or lack thereof) I was given.

Then there are the thousands I spent on the doctor that misdiagnosed me and performed a pointless surgery.

I am feeling a little bitter about all this.

I wish I could have been diagnosed earlier, before the recession. I will never understand why it hit at this point in my life.

Today is not a good day but I will continue to try to keep my head up. And in the meantime, I will work on taking out some of my bitterness on Athletico and the physical therapist that took advantage of me at one of the hardest points in my life.

Lymphedema and Tiredness

Lately, it feels as though my leg is wearing me down and I cannot kick this tiredness. I don't know how to tire myself out like I used to with running. I imagine that the mix of less exercise, more stress and this medical condition make for a nasty combination.

I have noticed that even though there can be some pain and extra swelling accompanied with exercise, that will give me more energy.

Also, when I eat a large amount of fruits and vegetables, I do notice less swelling. The problem, sometimes I need more food than a massive fruit salad for dinner.

I am trying some supplements of Rutin and Bioflavinoids which contains Grape Seed Extract and Quercetin. These have not been confirmed via research to help patients with Lymphedema but I am willing to try it.

I am hoping I will figure out some effective combinations to help me feel less tired.

If you have any success stories, I am all ears. If you want to vent about how freakin' tired you are and how its a huge downer for your social life, I am all ears then too.

Tuesday, May 25, 2010

Compression Hosiery in Lymphoedema

International Society of Lymphology

Monday, May 24, 2010

Reply to Comment by Elaine Sandhurst (UK)

It must be incredibly difficult to deal with this condition in both legs and I could not imagine the frustration and pain that accompanies this.

I do want to add, however, that my leg improved considerably with wrapping. I have much less pain, less swelling, increased ability to exercise, increased self esteem, etc. If my other leg develops Lymphedema, I would try to incorporate wrapping both legs in my life. It would be time consuming and frustrating but it could improve my condition and prevent my legs from worsening. I have experienced the result of not having any treatment on my leg and not wrapping it as I went a year without the correct diagnosis so in order to avoid the pain and extreme swelling I had to deal with for that year, I would wrap both legs.

Also, there are compression garments called sleeves and they make them for the legs now. Although they are so expensive (two would cost anywhere from $200-$400) I think I would try to save up for these items. These sleeves supposedly work just as well as wrapping yet you just have to put them on like pants. That is another possibility, albeit an expensive one.

Again, I want to stress that I do not know what it must be like to have to deal with both legs and I empathize for those that do. That would be a major struggle and would take a very strong individual to deal with the extremity of this condition.

International Society of Lymphology

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

Tuesday, May 18, 2010

Goodbye Dear Friend

I have yet to formally say goodbye to a dear friend of mine: running. Before my lymphedema set in fully, I was running most days of the week and I have to say that I loved running. I felt free when I ran as though nothing could touch me.

When my leg started severely swelling I stopped running because my leg was heavy and it hurt to run. After treatment, I eagerly looked at my doctor and asked him when I could return to running. He told me running was one of the worst things I could do for my leg. He also informed me I could no longer get pedicures--double blow...

Just in case, I asked each of my occupational therapists (I had two) and they both said no.

Since then I have avoided my Nike shorts and brightly colored sports bras and all of my running apparel. I wear my running shoes on "bad days".

So, I wanted to take a moment to tell running goodbye. We had it great while it lasted.

And to all of you who had to give up something because of this condition, I hope you can find something that will replace what you miss.

Insurance Frustrations

If you suffer from Lymphedema, you more than likely also suffer from anger and helplessness...against your insurance company. Despite providing my insurance company with plenty of information regarding all of my doctor's visits, diagnosis, medical records, prescriptions, etc., my insurance company without fail either delays payment of legitimate claims that should be processed immediately or they will not cover the claim at all. In fact the most frustrating thing about dealing with this condition is the lack of humanity expressed to me by my insurance company.

Example: For the fourth time now, I purchased compression garments through a company. When I received the invoice, I sent my insurance company the RX, the diagnosis code and the invoice. Despite this being sufficient for all previous claims, they now have an issue and since I did not have the medical equipment companies submit the claim, they may not reimburse me for the $250 worth of compression garments.

I have learned this the hard way time and time again: be psychic when it comes to your insurance. No just kidding, but I am nearly serious. You need to think of all of the questions that are possible. I called and spoke to a rep days before I purchased the compression garments to ensure that they would be covered. I asked his name (also record their name down and date and time spoke to them), how much the insurance covered, how to submit the claim, etc. The rep failed to tell me that the medical equipment companies need to submit the claims or the proper way of submitting the claims. Despite that they have covered my previous claims and did not alert me that it was an improper method of submission, I continued to submit the claims myself.

I am not sure if there is a resolution to this problem with the insurance company. I will continue to push my point and most importantly, speak with a supervisor.

At times, I feel utterly hopeless having this condition. Insurance coverage, hospital visit costs, doctor visit costs have set me back considerably. When we are trying to push through the feelings of despair that our lives have forever changed with this condition, we also have to fight to have our insurance cover the cost of managing the condition. We have met doctors who have been wonderful and those that have blown us off or misdiagnosed. We have been looked at by others differently and we have looked at ourselves differently.

I also try to be positive because crying or punching a wall after I get off the phone with the insurance company does nothing. I guess we just have to keep going. Try to remind ourselves that things will get better, maybe insurance will get better or our condition will improve. If none of those things happen and we are left hopeless, may we be lucky to have the support of our family and friends.

Sometimes it is not enough to take each day as it comes but instead we feel we need to take each minute as it comes. We are luckily not going to die from this condition; we just have to fight to keep going. If you can make it through this, imagine what else you can cope with and overcome.

Friday, April 23, 2010

Battle of the Bulge

My leg has improved considerably since I started bandaging my leg but I have these two extremely annoying problem areas that are more stubborn than I am...My knee and ankle are just not fans of getting smaller. My calf and thigh will be practically the same size as my other leg but there are these odd bulges in my knee and ankle. There are lymph nodes in both those areas so possibly that is why those two spots are the worst.

My occupational therapist suggested I get creative with the foam padding and make shapes to help the swelling in the problem areas. It sounds bizarre but it actually works. I have two foam shapes that I place on my knee and ankle prior to wrapping. I place the foam over the stockinette though because it can be a bit irritating on bare skin.

Oddly, this condition requires some creativity. Try out different shapes and ideas with the foam to help with your swelling. Also, there are some stockinettes that have mild compression built into them. They can be a bit too tight on the upper thighs but I wear it over the foam padding and that seems to work also. My knee went from looking like a bagel to being able to see my knee cap! I need to figure out where to get some of these supplies so I will post places once I get more research done on pricing and where to buy.

Lymphatic Research Foundation Walk-a-Thon

The Lymphatic Research Foundation has posted in their March 2010 newsletter information for hosting a Walk-a-Thon. This is such a wonderful idea! They will even send you materials to use as a guide for hosting the event. I think I am going to try to host this in Chicago. And, since it is a Walk-a-Thon, all of us suffering from Lymphedema can participate!
Go to March 2010 Newsletter.

Not a painful condition?

The doctor that gave me the diagnosis of primary lymphedema stated that the condition was not painful. While I think he is a wonderful doctor and would not have found treatment without him, I still do not agree with him that this is not a painful condition.

This condition is without a doubt uncomfortable. My leg will turn bright red and feel as though it is on fire it is so hot. The swelling causes an ever present feeling of thickness and uncomfortable feeling that never goes away. Then there is the aching feeling and throbbing sensation that I feel at times. In fact, almost every person I have come into contact with have said they do feel pain. I am not saying that I am walking around in excruciating pain all the time, it is not often and usually only accompanies the "bad days" but it is yet another important indication that so much more research needs to be done about this condition.

I am truly grateful for the bandages and they have without a doubt changed my life but I can't help but think while I roll and wrap every single night that there has to be something more that can treat and possibly cure this condition. Wrapping seems archaic compared to the medical advances of our time.

Luckily, there are people out there trying to find answers. Here are some of them:



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.

Tuesday, April 20, 2010

The Inevitable Stocking Crisis

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.

Friday, February 12, 2010


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.


First Fashion Post!

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

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:

Foam and or padding

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.


I will post some pictures of my mummified leg shortly!

Helpful Resources

By far, the best resource I have found to date was this book:
Living Well with Lymphedema

Extremely Helpful Websites:

Places to buy compression stockings:

Foundations working toward making a difference:
The Lymphatic Research Foundation

What is 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