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 on..lol).  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 hectic..lol.  Stay tuned as I continue my journey....LLisa