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Monday, February 25, 2013

What your lymphatic system does and what is Lymphedema?

Why do we need a working lymphatic System:
The lymphatic system is a network of tissues and organs. It is made up mainly of lymph vessels, lymph nodes and lymph. Lymph vessels, which are different from blood vessels, carry fluid called lymph throughout your body. Lymph contains white blood cells that defend you against germs. Throughout the vessels are lymph nodes.  T hese nodes are where white blood cells fight infection. Your bone marrow and thymus produce the cells in lymph. They are part of the system, too.

The lymphatic system clears away infection and keeps your body fluids in balance. 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.

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

My Lymphedema Journey Part 2

 Spring 2009-February 2013

In the Spring of 2009, the swelling in back had increased so much, that I had to up the dose of my main pain killer.  Before the increase I was taking 2 20mg Extended Release Oxycodone(generic for Oxycotin) per day, 1 in am and 1 about 2-4pm.  Around this time Oxycodone was discontinued on the market, so I was forced to buy brand name, which to me was the same med with a very steep price increase.  I started taking 2 40mg Extended Release Oxycotin per day and have remained on that dose today.  I will more than likely be on this medicine for the rest of my life, so I am careful to only move up in dosage as a last resort, so that I have plenty of room if I need to up the dosage in the future.  I take pain medicine, so that I can do my daily activities and to this day will never understand how someone that doesn't need paid medicine can take such high dosages that I hear about and still walk. 

My Lymphedema therapist, Angela, had seen a demonstration of a MLD(manual Lymph Drainage) machine that she thought could work for me and asked me if I wanted the company rep to meet with us and let us demo the equipment.  And so, I was introduced to the wonders of the Flexitouch machine.  I had always been consistent on my daily self care; however, doing the MLD daily was so painful for my swollen hands that the Flexitouch machine was a hand saver for sure.  Just like the reid sleeves, you have a full cycle for each limb that lasts about 1 hour each.  In order to do 4 limbs it takes over 4 hours a day, with time in between for bathroom breaks and switching out the pieces of equipment.  Flexitouch mimics  MLD with the use of air chambers that fill and deflate, with the same gentleness as a Lymphedema therapist's hands.  I normally do 3 to 4 cycles a day and if I don't make time to do my machine everyday, my body suffers with the increased fluid, that remains stuck in my lymp nodes, throughout my body.  I tried many different schedules to get my 3-4 hours on my flexitouch machine daily.  I have tried to have the machine in my bedroom and do 3-4 hours in the am before coming downstairs, which left me listless because you have to lay down or recline while attached to the machine.  Tried half in the am, half at night before bed; spacing it out during the day; and right now have settled with getting up and ready for the day, then coming downstairs and spreading it out throughout the day.  After just a couple of months of using Flexitouch I needed to be remeasured for new garments because it was moving the fluid the most in the 5 years since my diagnosis.  At this time I was using knee highs, capris, arm sleeves, and gloves that ended at the tips of my fingers.  At the end of the bowling season I had to drop out of both bowling leagues because I was just too exhausted from self care and my back pain was making it uncomfortable to follow thru with throwing the bowling ball.  I continued to have sleep issues, due to being uncomfortable in bed and since I was using the flexitouch, decided to forgo sleeping in all 4 Reid Sleeves every night.  I still wore a set of full finger gloves to bed and wore the Reid Sleeves as needed, but only 1 or 2 at a time.  When I fly, I still don all 4 Reid Sleeves, to help combat inflight swelling.  If you see me in what I call my blue reid sleeve michellin man getup at an airport, come up and say Hi!

2010 brought another change to my self-care toolbox, with the discovery of Kinseo Tape.  You may have seen athletes using this colorful tape at the last olympics.  Angela and I were trying to come up with a solution for the ever increased swelling in my back and decided to give Kinseo tape a shot.  If you can't tell by now I am pretty game to try anything that may help, which Angela loves, because trial and error is the only way to see if something may be helpful or not.  We started taping my back and it actually WORKED!!! I was so excited to finally get some relief from my back pain.  We also tried it on my arms and hands, since my hands were becoming troublesome, because where my gloves stopped, the swelling would start.  At this point only my tips were exposed during the day and I wore full gloves at night.  I would have worn full gloves during the day; however, there was no way I could use a computer or pick things up without my tip exposed(think of trying to do any of your daily activities with winter gloves  We taped up my arms and my hand and kept a watch on my measurements and I was so excited to see that even though my arms were a little bigger, they stablized and my fingers actually became fluid free.  I was so happy to be able to go back to my jeweler and be able to get my wedding ring sized down and was able to wear it on my finger and not over my glove.  I even sized down a ring Mitch had given me for my birthday before we were married, that had sat in my jewelery box since diagnosised.  May seem like a small thing to some but to me it was priceless to wear my wedding rings 24 hours a day and not just when I had my gloves on.  What a wonderful summer I had too, because I was able to get some tan and not feel like I had winter thermals on in Virginia's high 90 degree summer days.  I still wear capris and knee highs, but do not feel as hot as I felt with compression stockings on my upper and lower half.  Summers are still hot and once our kids have all graduated from high school, we have talked about moving where it is not as humid, so the heat doesn't keep me inside w/the AC.  About a year after taping my hands, I did a "wonder what would happen if I stopped tapping my hands experiment" and realized I no longer needed to tape my hands for them to be fluid free.  I still tape my arms to keep the swelling down and because of gravity Kinseo tape was not successful on my legs. 

I started going to a weekly mom's bible study and another women's group in the fall, so I would be able to get out of the house and talk to other adults.  Adding the Flexitouch machine and Kinseo tape had another wonderful side affect--I started losing weight.  My weight had crept up over the years when my Lymphedema became so out of control, no matter that I was self-managing it daily with the tools I had on hand at the time.  Luckily, companies continue to work on self-management tools for Lymphedema suffers awaiting new discoveries, providing us swelling relief or something that may save time in our daily management of this uncurable condition.

In February of 2012, I decided that I really needed a Lymphedema "tune-up", since it had been years since I went for any regular MLD treatments with Angela.  Because I have rare all over Lymphedema I really should go at least every other year if possible.   The Kinseo tape was helping my back, but not as much as I needed.  I started going to Angela 3 times a week for MLD, also wrapping in compression wraps from my hips down to my toes.  Normally, you lose lymph fluid pretty regular for a month or so; however, my legs kept losing so much fluid weekly, we kept going until June!  My back and stomach swelling was still hard to control and I finally decided to try a compression vest, which had only been out a couple of years.  I resisted going to a compression vest because I knew it would be so uncomfortable, but felt I no longer had a choice but to try one.  My back felt like it was going to break into every day and it was so hard to go about my daily activities with the pain, even with pain medicine.  Just in time for vacation I received my vest and a new set of hose.  For the first time I decided to try toe less knee highs and just order a toe cap to my right foot--and for the first time in 8 years I could wear sandals between my toes.  I had done so much maintenance prior to the vacation, I knew if I cheated a little with my hose wearing that I could get the swelling done when I came back if necessary.  We went on a family vacation at the beach and for the first time I went without my hose for days in the heat.  I laid on the beach for hours at a time, went out sight seeing and out to dinner without my hose on.  I still did my flexitouch everyday and by the end of the week my hose were tight and I was more swollen, but I would not trade that week for anything.  Being free of the compression hose, which are still to this day uncomfortable and tight, was such a treat.  Since last summer, I have gone without my hose at times, so I can dress up and go out with my husband, so I can spend more time at my neighborhood pool, so I can get a suntan on our boat or at our Rivah beach.  What I have gained by being so diligent  in keeping track of my body and daily maintenance is that I know my body enough to know how to prepare for upcoming times I want to be without my hose, deal with days when I run out of time to get on my Flexitouch, and know that when I have a bad day or days; good days are right around the corner.  It gives me peace of mind, to know that I will handle whatever the future brings.  This past Christmas I was able to get into my first pair of snowpants, ski boots, and boots taller than my ankle and I mean 1st pairs EVER!  I have lost more weight and my compression vest is now too big, plus it is time for more compression hose.  Back pain still plagues me everyday and I just found out last week that Flexitouch has new garments that now overlap, instead of creating the gap on my lower back, where the fluid pools.  The company rep is sure this will fix my lower back pain.  I will be going for treatment with Angela in the next couple of weeks and insurance approval will have new Flexitouch garments in a month, with a compression vest and compression hose to follow.  I still struggle with sleep problems at night, good/bad days, pain, time management issues(can you imagine carving out 3-4 hours a day to lay or recline hooked up to a machine that makes you sleepy); but I know I am living the best life I can right now and my goal is to find ways to make it even better.  I use any time savers I can find.  I still have days I overdo it and end up paying for it the next day.  I sometimes feel guilty about my limitations, such as I would love to spend the afternoon at the mall with my daughters without having to stop and leave because I can't walk anymore.  Scooters and wheelchairs just do not work in the stores at the mall and I even have problems if I take my walker fitting through the clothes racks in the stores.  My family has been awesome throughout this journey, because it has not just been my journey, it has been a family journey and without them my life would be 20times harder than it is and nowhere near as  Stay tuned as I continue my journey....LLisa

Sunday, February 24, 2013

My Lymphedema Journey

Part 1 Spring 2004 thru April 2009:

History and Initial Diagnosis:
It was the Spring of 2004 when I finally heard the words “You have Lymphedema”. I had been having massive swelling in both feet and ankles for years and had finally decided to not give up until I received a diagnosis and treatment. Well along the way, I had a planter’s wart on my right foot. I went to a podiatrist and he tried several treatments before doing surgery. Well during this time I was seeing him every few weeks during a 3 month period and treatment started in February and ended the end of April. During that time he noticed the differences in my feet and ankles. On my last visit he said he was sure I had Lymphedema but should go to a vascular surgeon for the diagnosis. I made an appointment to see a vascular surgeon, but of course saT on pins and needles while awaiting the appointment, which was scheduled a month away. During this time, I looked up as much as I could about LE, which was no where near enough for me to comprehend how my life would change. The first night I looked online and found a wonderful LE community, run by Pat O’Conner, who lives in Atlanta, GA. I wrote an email pleading for any help anyone could give me and he wrote a very calming and supportive email back to me telling me to take it one day at a time and suggesting I read “Coping with Lymphedema”. I was able to go out that night to a local bookstore and they had one copy left. Between that night and the next day I had read the entire book. I still had tons and tons of questions, but was more calmed downed then the first shock of the initial diagnosis. In May 2004, I had the visit with the vascular surgeon. Thank goodness I had read about treatment options before going, as he told me that I just needed to keep my legs up. When I questioned him about MLD treatment and the fact I knew Retreat Hospital offered MLD treatment. He wrote me a prescription for treatment and sent me on my way. Wow, I had to wait a month for that? His office did call Retreat and tell them I was an emergency case and needed to get in asap. How great did that make me feel—I had just been diagnosed and my case was already an emergency! My wonderful therapist, Angela, from Retreat called me and told me they would be able to get me in within a couple of weeks. During that time since I knew I would be in bandages for the majority of that summer, I thoroughly enjoyed the feeling of sleeping with bare legs and continued to lay out in the sun as much as possible. The laying out in the sun became difficult though, because for some reason my stomach would burn deep inside when the sun hit it. I still keep Gottahavesun as part of my email address, since I do still love the sun, just may have to go about different ways to get my dose of warm sunshine on my face. I turned 39(yes really 39) on the 1st day of June and started treatment about 1 ½ weeks later. I was initially diagnosed with Bi-Lateral Lymphedema in my legs and Lipedema. After going thru my family history during my initial visit at Retreat I had the aha moment the my Grandmother on my mom’s side had Lipedema and Lymphedema. She died when I was about 12 but I remember her hips and legs being so much bigger than her top half. Later my mom also told me her Aunt also had the same shape. Of course neither were ever diagnosed because diagnosis was few and far between back in their day. Back in 1996, when I was 31, I had a gastric bypass because my weight was over 300lbs and the majority of the weight was in my lower half. After the bypass I was able to get my weight under 200, but my lower half still remained 2-3 sizes bigger than my top half. I even remember when I had minor surgery in May 2004, the nurse pulled back the covers after my surgery and said wow you didn’t look as big as you are when the sheets were covering your lower half(lol-thank you very much). I too remember my mom taking me to tons of specialist when I was little about my weight and not being able to determine why my weight was creeping up, even though my eating was balanced and not excessive. Before diagnosis I had always suffered from really big legs. I was never able to wear the stylish knee high boots, even when I was 130 lbs. My calves looked like columns and were hard as a rock, not flabby like most people would think.
Initial Treatment:
I started treatment in June 2004 at Retreat Hospital. I was working full-time as an IT Project Manager at a Major Insurance Carrier, which I had been employed with since 1988. I went to Retreat 3 times a week in the morning and then went on to work after treatment. My therapist, Angela, started by measuring both my left and right leg from my toes up until my waist, so we would have a baseline. We concentrated on my left leg at first, since that was my biggest limb. I would have to jump off the table as soon as she was done with the MLD and run to the bathroom(a very good sign that fluid is moving)! After about a week, Angela was doing MLD on both legs and we were wrapping both of them. I still went 3 times a week and wore the bandages 24 hours a day, except the morning of my appointment, when I would take off my wraps, take a shower, and head to Retreat. You are given 2 sets of bandages, so that you can wash the dirty set and hang them to drip dry, before rolling them again. During this time we were using 14 bandages per leg—for a total of 28 bandages. I think that may possibly be the most inconvenient and time consuming piece of this part of treatment. I was lucky that may family helped me roll, because that is all I felt like I was ever doing. Bless the people that still wrap each and every night. My happiest time was when I was able to box up my wraps(not that they haven’t made reappearances from time to time). I stayed in MLD therapy most of the summer. I do remember one vivid visit, and that is the day Angela brought out the compression hose for the first time, about 2 weeks before we actually ordered them. Once I saw them and touched them, the inevitability that I would be wearing them the rest of my life hit me and the tears started coming. I was only 39 years old and I had to wear “those ugly old lady looking hose” FOREVER! I’m glad she showed them to me at the beginning of the therapy session so I could have a good cry, while she said not a word, but let me work thru the impact of what I had just seen, so that by the time I left I was okay enough to drive to work and get through the rest of the day. Not that I didn’t cry about those hose during other times in my journey, but not as I did that day. Almost 5 years later and I can still remember it vividly. I do admit that some days I may stay in bed longer because the thought of having to put on the hose, makes me want to delay getting up. I also sit on the side of the bed and think okay I’ll put them on after I count to 25, maybe moving the number up if I’m not quite ready to yank them up. Other days it’s no big deal to get up and put them on and go about my day. By fall 2004 I had received my hose, my husband had been trained in MLD to help me out and I was still working my workaholic schedule at work. I also received a pair of reid sleeves for each leg to wear at night around the house and to sleep in. I made a conscience decision when I received my compression hose that I would continue to wear my clothes as normal, which means my legs are legs with compression hose. I wear shorts, skirts, short sleeve shirts, bathing suits, sandals or any other shoes a bare leg woman would wear. I have never regretted my decision to not cover up my hose in embarrassment. I have talked to other LE patients that only wear pants or long skirts to cover up their hose because they don’t want to stand out. If you had any other “well-known” disability would you feel the need to cover up your medical gear? I do get looks and sometimes questions, but to me the more people ask me questions is just one more chance I get to educate others on LE. The more people that know about LE, means the possibility of earlier diagnosis of other LE patients. Everything seemed to be under control.

Months following initial therapy:
During my initial therapy I obtained a temporary disabled parking pass, because let’s face it walking with 14 wraps on each leg is not easy. After I finished therapy and was daily donning my compression hose, the fatigue and heaviness was still there in my legs, so I had to go back to my doctor and get a permanent pass signed. Another vivid day in my journey, turning in my favorite “MAD4SUN” license plate(I love the sun-what can I say) for disabled plates. I was permanently DISABLED at 39! I felt labeled and not a label I was ready to accept, but there it had hit me in the face again-my life was changed and not the way I had planned it to go. Oh, let me mention I had already starting going to a wonderful therapist not long before I was diagnosed and she helped me thru the stages of grief, before acceptance. She allowed me to grieve about what handing in my plates for the disabled plates meant to me, but not long enough so I couldn’t keep going along my path. Somewhere between November and December 2004 I noticed my arms started to feel heavy and would tire easily. I didn’t know if I were being paranoid or not. Hoping that I was still being paranoid, I still decided to track my arm measurements each month, along with when I measured my legs. The increased pain and heaviness, which I would say felt like when you have to hold your arms up in the air for any length of time and they get so heavy that you have to put them down. Well my arms were already down, and that feeling would not go away. I started having problems typing for any length of time or taking notes, which I did all day long in my meetings. I had to start taking more work home, and I was already working a ton of hours. After so many years of being the overachiever, I had to start asking others to help do some of the typing or take notes for me in meetings.
One morning in January 2005, I could not ignore the symptoms anymore, I KNEW I had LE in my arms and could not ignore it anymore. I called Angela and told her my suspicions along with the increase in limb size, she said I needed to come see her, because I was probably right about my diagnosis. Well, I had another plantar wart on my foot, so I had to have another minor surgery and then I would come see her, while I was healing. I only planned to take off the day of surgery and then be back to work the following week. My body had other ideas and I developed an infection and was out for several weeks. During that time I went for my second round of MLD treatment. It was not as bad this go around, because I knew what to expect. I continued treatment for about 2 months this time. I was then measured for new lower hose, as well as arm sleeves and gloves. The first set of gloves stopped on my mid hand and did not have my fingers covered. I also was measured for arm reid sleeves to wear at night. So, have you kept up count yet—that is 4 reid sleeves-one for each limb-to wear every night! I was feeling really tired and felt I was dragging around at work. Since I was in so many meetings and carried my laptop to many of them, it was becoming more difficult to move around the building. I decided I was ready to get a rolling walker with a seat. I started to use this most days in and out of work. It was useful to carry my meeting materials around, but also gave me a seat when I needed to rest. That spring my project was in full swing and I still think it is a miracle I made it to work everyday and was able to keep everything on track, but this time, I couldn’t do it by myself as in the past. I realized that my health had made me no longer dependable day in and day out, like I needed to be for the position and responsibilities I held. This was an awakening that my life was about to take one more huge change, whether I was ready or not. The weekend of my 40th birthday, I put my project into use and it seems that the last bit of energy I had left was used during that weekend. Kind of like my body allowed me one last success in my work career before running out of steam on the schedule I was trying to keep up. Within two weeks of my 40th birthday I was at my Primary doctor and together we realized I needed a rest and I started on short term disability. By that time I was in pretty bad pain and had to go on heavier pain meds than I had been on before. Oxycodone was prescribed and short term became long time disability. I feel that my full-time job is now the daily management of my now full body LE. I never would have thought that at 40, I would no longer have the job that I had held for 17 years and that I was now considered a stay-at-home mom. Actually, I still have a problem when I fill out forms that require an occupation, because I didn’t choose to be a stay-at-home mom and disabled is not a check box. I don’t feel “retired” fits either. I normally check the stay-at-home/homemaker box, because of all of the boxes it sounds the most “acceptable” for someone my age. When people ask me what I do, I automatically spit out that I use to be a Project Manager at a company I worked for 17 years, before becoming disabled. I guess I still feel the need to tell people my career accomplishment before I stopped working, instead of being happy telling people that disability is my full-time job.

Short term disability benefits lasted for 6 months and in the meantime I applied for long term benefits at my company and SSDI. I filed paperwork in September 2005 and included with my applications pictures of me in my compression hose I wore during the day, picture of me wearing all 4 Reid Sleeves at night, and a list of my daily activities. I truly believe that the combination of all of these items, including how long each daily tasks took me to complete helped me win my swift approval. By December 2005 I received my approval from SSDI, and I realize how lucky I was to not have to go through the months or years appeals that some have struggled through. On the other hand, it made me realize just how disabled I was, because getting an SSDI approval on the first try is pretty much unheard of. I always feel bad when others tell me of their difficulties working with SSDI to get their claims approved and the one piece of advice I give is to send in pictures of yourself with your claim, so that you are not just a case number to the reviewers looking at your information. I also completed a very detailed daily timeline, so that the reviewer would see I could not possibly work and manage my lymphedema. Detail how long it takes you to clean and prep your skin for bandages or compression hose, how long it takes you to wrap, wash, or don bandages, how long you stretch and exercise each day. How long it takes you to do your MLD each day. Also I included details of how long I can sit or stand at a time, before having to change positions. I included a list of all medicines and side affects. Due to the pain medication and depression medicine, I have memory and cognitive problems and must do puzzles every day. The puzzles are easy crosswords, suduko, seek and find, etc. These puzzles take time every day and I must keep them up to exercise my brain as well.

After I stopped working, it took me awhile to adjust my day so that I felt I was accomplishing as much as I could. I did go through some months of sleeping really late, when I was going thru the “what’s the point of getting up early” period. I would get up around 10am or 11am, because I wasn’t getting up to go to work and I just wanted to kill time until my son came home from school. I had no energy during this period, because I was just laying around and not moving very much. My husband would call late in the morning and would say “you are STILL in bed”. That would make me guilty enough to get up, shower, then go sit in my recliner and doze on and off until my son came home. This period only lasted a couple of months, before I could not take one more wasted day. I think I finally realized that I was not going to be able to go back to work but I did have a choice to do as much as I could during the day to manage my LE, so that I could enjoy my time with my family in the afternoon and evening. My goal everyday by the time I go to bed is to not feel that I have wasted my day by just existing. Existing is what I did when I laid around all day and for me to remain happy I need to feel my life has purpose.

I rejoined my gym back, so I could get out and do water aerobics every morning. I normally do the exercises on my own in the early morning, but at least feel that I’m among the living by not being shut in my house everyday. My husband and I joined a weekly bowling league right before I had to stop working. It was a big deal for me because I hate to try new things in front of people, because I am so self-consensus and don’t want people looking at me. Yes, I know people would have already been looking at me in shorts with all my compression garments on, but still I had so many gutter balls! I did get over it of course just took me a season or two. The following school year I also forced myself out the door during the week to join a woman’s bowling league on Wednesday mornings. The league runs along the same schedule as my children’s school. I have been with the same team for about 3 years now and at times wonder if I shouldn’t quit because I will have some bad weeks where I’m in a lot of pain; however, I know in the long run I NEED to do this for my emotional as well as physical health. I normally take additional pain meds in the morning before I start bowling, so I’m not hurting too much while I bowl the 3 games. I talked with my doctor and as long as I’m able to continue doing activities I enjoy, then she is fine with me increasing my pain meds as necessary.

That fall was also my realization that in order to go places requiring a lot of walking that I needed a wheelchair. My doctor got me one and there it sat in my garage waiting for my courage to use it. December 2006 came and my husband and I went up to New York to visit his sister and brother-in-law. We got tickets to a Broadway play and would be taking the train into the city. Mitch said there was no way I could make the walk, that I needed to use a wheelchair. I knew it was time and my sister-in-law told me she would borrow one from her mother-in-law, so I didn’t need to fly with mine. Well when we got to the train station my husband told me to get in and after hemming and hawing that I could just push it until I REALLY needed it, with his response that I did, I finally got in. Well, the tears starting flowing because I had got to the point of having to sit and ride, instead of walking at the same pace as others. I can laugh at the day now, years later. But the fact of the matter it was a very old transport wheelchair and so many pieces fell off of it that if it didn’t belong to someone else we would have left it by a dumpster. Foot rests were falling off, screws were falling on the ground, the ride was so rickety. But all in all, I got through the day and could say I used a wheelchair when I needed too. I’ll admit that another phase in my journey is coming to pass and I am having difficulties accepting it as well, and that is I need to use a wheelchair more and more in my normal activities, and not just on major walking activities. This too will be accepted as a norm/no big deal in time.

Currently, my day to day activities are pretty jam packed, with not only managing my LE, but also with being a stay at home mom. I didn’t think I would every want to be a stay-at-home mom, because I would be bored to death, while the kids were in school. Well, after being a stay-at-home mom for almost 4 years now, I can say my schedule stays pretty full. I have a 17 year old son, who is a senior. We also became a full-time blended family last year when my 13 and 15 year old step-daughters moved in with us. Before the girls moved in, I was feeling the start of the empty nest syndrome and was feeling kind of lost. The girls keep me pretty busy with after school activities such as dance, inter-murals, band practice, swim team, and weekly counseling sessions. I do struggle with my energy levels and mobility several days a week, so I’m grateful for my husband’s schedule which allows him to take the girls to several of their weekly activities. At times he is out of town on business and I will have to take them to all activities, which makes me realize how much I depend on him daily.

I have had some amazing changes in my lymphedema journey since April 2009, so please stay tuned for another post this week, bringing you up to speed on my journey from 2009 to present day.  Please feel free to share this or comment.  Lisa

Saturday, February 23, 2013

Baked Vegetable Egg Rolls

Baked Vegetable Egg Rolls


  • 1 bag of coleslaw mix
  • 1 package egg roll wrappers
  • 1 can water chestnuts, chopped
  • 1/4 cup scallions, chopped
  • 1 tablespoons chopped fresh ginger
  •  1 tsp olive oil
  • 1/4 cup water
  • 1 tablespoon cornstarch
  • 2 tablespoon soy sauce 
  • Non-stick cooking spray
Optional ingredients if you have on hand: 1/2 cup bamboo shoots; substitute hoisin sauce for soy sauce; if you want to add 1 cup shredded pork or chicken, add an addition 1 tablespoon soy sauce and 1 tablespoon water, when called for in recipe.  You can really add whatever ingredients you want, as long as you make sure you add additional wet ingredients, so it will not be too dry.
Heat the olive oil in a large skillet over medium heat. Once hot add the coleslaw mix, sprouts if using,  chestnuts, and ginger to the pan and cook, stirring frequently for 4-5 minutes, until the vegetables just begin to wilt but still remain a little bit crisp. Mix the corn starch with the water and mix thoroughly. Add the corn starch mixture and soy sauce to the pan along with the green onions. Cook for an additional 1-2 minutes or until the sauce thickens. Remove from heat and let cool.

Place two tablespoons of the cooled mixture on the center of the egg roll wrap. Fold the bottom up over the filling. Next, fold the two sides over, making it look like an envelope, then roll it up like a burrito.

Preheat oven to 400.  Place your egg rolls on a cookie sheet sprayed with non-stick cooking spray.  Spray the top of the egg rolls with cooking spray(helps make them crispy).  Place in the oven and bake for 8-10 minutes then turn them over. Bake for an additional 5-7 minutes or until crispy and golden brown. Serve with a dipping sauce, such as plum sauce, dumpling sauce, sweet chili sauce,  soy sauce, or sweet and sour sauce. Enjoy.

These may be frozen after cooking.  Once cool you may store in a gallon size bag or container.  Layer with wax paper and place in freezer.  To reheat, place frozen egg rolls in a 400 degree oven for 8-10 minutes.  My kids stick these in the oven while it is preheating and they are still ready in 8-10 minutes.