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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

1 comment:

  1. Lisa, Thanks so much for sharing your journey. I learned a lot from you in this post and am looking forward to reading the next post about your journey. Love you!