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
http://www.lymphedemapeople.org/,
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
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.
