Lymphedema and Careers

Someone asked me the other day what would I be doing if I wasn’t a Real Estate Agent. I told him “not much”. He then asked “why?” and I said that my legs were the issue. He then said “there are a lot of sitting jobs” and I had to explain that sitting makes my legs swell more, standing makes my legs swell more and basically, unless I could find a job that allows me to do a combo of sitting, standing and walking then I will have issues with my lymphedema. Most people do not realize that sitting in a chair is the worst thing for  me and I have a habit of forgetting to get up and move every 10 minutes or so, so that by the time I do want to get up, I can barely stand.

I have had other jobs in my life. I grew up working in a convenience store. I am a certified teacher, I worked with mentally challenged adults in a sheltered workshop and in my home (I still have Vanessa who has lived with me for over 14 years), I owned a used bookstore and I am now a Real Estate Agent. Oddly enough, I wanted to be a real estate agent most of my life but I felt that I was not confident or outgoing enough for it. It was not until I spent 2 years at home, with my legs up and rarely leaving my house that I realized that, although my legs were not as painful, I was just existing. I was not living. I realized  that I wanted to talk to people and I decided to follow the career path that I had originally wanted. I am not any more confident in my looks, I still hate to get my photo taken (the reason behind my door knob business cards and For Sale signs) and I still have to fight my introverted nature but I think that is improving . Is Real Estate the best career for me? I think it is. I love looking at houses, I love helping people find  homes that they love and I love helping people sell their homes when they need to move on in their lives. There is a lot of paperwork but I enjoy that. I just have to remember to get up and move around more while I am doing it. Yes, there are days when my legs are really painful, especially when I am going through a busy time and I don’t get much “leg time” (time for my legs to be elevated) but a busy time means that I am busy with listing, buying or selling houses and that makes the pain I am in a lot more manageable. I really don’t think that there would be any other career where I would have as much freedom of whether to sit, stand or walk.

Of course, everyone is different, their lymphedema is different. I have sisters who are nurses,  a sister in retail sales, a niece who is in the military, a brother who drove a truck (although this was a bad choice with regard to his lymphedema), etc. All of our lymphedema is  different (other than it is in our legs). Some have a lot less swelling and pain than others.

When choosing a career you just have to figure out what is best for you. It took me a lot of years but I have finally found it. 🙂

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Fighting to Not Be Disabled

*This post repeats a few things that I said in other posts but I wanted to give the people, who have not read my other posts, some background about me.

I spent two years of my life being “disabled”. I did not work outside my home. I spent most of my days laying on the couch. The less I did, the less I was able to do. Yes, my legs looked a bit better (not a lot smaller but they didn’t look like they were about to explode) but I realized that this was not the life I wanted to live…I was not living…I was just existing.

I decided to go back to work . I entered the world of real estate where I get to meet a lot of people on a daily basis. The first time people see my legs they think that I am very limited in my physical abilities and rush to find me a chair to sit in. They see me as disabled. No matter how many times I say that sitting is worse on my legs than walking, people really don’t believe me… UNTIL one day I mentioned that I was going kickboxing that evening. I immediately saw a change in the way they treated me. They stopped trying to get me to sit. 🙂

I didn’t start kickboxing to change people’s perception of my abilities but I have to say that it was an unexpected bonus. I originally started working out at the gym to lose weight and to feel physically healthier. Kickboxing was a small part of the program I was doing but the moment that I put the gloves on I realized that I was going to love it. I started taking kickboxing classes. During these classes I came to the realization that kickboxing was going to help me fight to not be disabled. Having to lift my legs to kick is helping to strengthen the muscles I need to lift my legs in every day life. There have been times in my life where lifting my legs to get up stairs or get in or out of a car have been very difficult. I was very used to tripping up stairs at the end of the day. That hasn’t happened in quite a while. 🙂  Here is a Facebook status that I wrote recently:

“Thank goodness I have been going to the gym. Thank you Ryan Manimal Staples.  The house I just showed had rock stairs going down to the home that were not legal rise/run. Each stair was at least the height of my knee and there were a lot!!! I think if I had shown this home before I started going to the gym I would still be stuck there. Going up the stairs I had to lift my legs as high as I possibly could and, did I mention, there were no handrails…”

This status shows just how much going to the gym has helped me.

I have had some concern from the lymphedema community  with regard to me kickboxing. They feel that the impact will be bad for my legs but, as I have explained to them, I kick for height so I do not hit the pads with my legs with a lot of force. My goal is to kick higher, not harder.

I love kickboxing and I love what it is doing for the quality of my life. Will I ever be a great kickboxer? NO (I am just not that coordinated 🙂  and I don’t kick hard) but I don’t care. It is something that I am doing for myself and I feel the more that I do it the less disabled I am… I am Fighting to Not Be Disabled!!!

Lymphedema and Exercise

Exercising and lymphedema is a very controversial subject. Once again I would like to say that since lymphedema varies so much from person to person everyone seems to have their own opinion so  I am just going to be giving my own experience and opinions.

Personally, I know that I feel better when I am moving. Sitting or standing for long periods of time hurts me a lot more than walking or going to a class at the gym. For the last 10 years or so I had a great excuse not to exercise….I had no sneakers or shoes that were suitable for going to the gym or walking for any extended periods. Every gym I wanted to join refused me due to my lack of appropriate footwear or they believed a person with lymphedema should not do strenuous workouts. If you have read my other blog posts you know that I finally found a gym and a trainer that would work with me at the beginning of this year. It has been great. My trainer and the other people in my classes have been amazingly supportive. Is it helping my lymphedema? Probably not, but it is not hurting it either. It is helping my overall health and my self confidence.

A lot of people recommend swimming or water aerobics for people with lymphedema and actually those are really good forms of exercise if it wasn’t for the fact that they would involve putting on a bathing suit and having people stare at and make rude comments about my legs (this has happened to me numerous times). I know that I should ignore it but it is a lot easier to say than to do. I actually plan to try it again when the weather warms up. I have been looking at bathing suits… I am hoping that the confidence that I have gained through going to the gym will help me ignore the comments and the stares.

People with lymphedema who can walk, should walk. Get a pedometer and compete against yourself every day. If you were able to walk 100 steps today then try to walk 101 steps tomorrow and continue to increase your steps every day.

If you are a person who can’t walk but you can move your arms, then move them (wave them in the air like you just don’t care 🙂  ) Try to do any type of movement every day. Do whatever you can do and try and do a bit more each day.

I know I titled this post as Lymphedema and Exercise but in reality I could have called it Everybody and Exercise because what I said  actually relates to everyone. My friend Starr loves the quote “No matter how slow you go, you are still lapping everybody on the couch”. She does not have lymphedema but she has been dealing with some other health issues. Her exercise of choice is the treadmill and this quote helps her realize that every time she does it, she is accomplishing something.

Exercising is a very personal thing. Find something that you like to do (or can do) and do it!!! Don’t compare yourself to others…compare yourself today to yourself yesterday.

Lymphedema and Fashion

How does lymphedema and fashion go together? My lymphedema has actually dictated my fashion style most of my life.

When I was younger I had to wear wide legged jeans while everyone else my age was wearing very tight legged jeans. I also had to wear pants/jeans that were way too big in my waist just so I could get the jeans up my legs.

I remember a time when I was a teenager when mini dresses were in style and all of my friends got them. I got one too. We all wore them one day and as we were walking around the mall people kept making rude comments about my legs. Needless to say I never wore a mini dress again…. Actually, I lied. I did wear a mini dress again. I had gotten a part time job as an elf for Santa Claus at the Millbrook Mall in Corner Brook, Newfoundland. I was just an alternate for when the 2 regular elves couldn’t do their shift. My sister Carla, who also has lymphedema, was a regular elf. lol  It was funny when Carla and I did shifts together because people would mention our big legs and we would say that all of Santa’s elves had big legs. And that was all we had to say…

As I got older I continued to wear the wide legged jeans or sweatpants with long shirts that did nothing for my body shape. I didn’t care what my clothes looked like as long as they fit over my legs and arms.

Eventually my legs got too big for even my oversized jeans and sweatpants. I had to start wearing dresses or skirts. This was sort of a blessing in disguise… from the moment I put on my first dress I started getting compliments. People thought I had lost a lot of weight but in reality it was just because the dresses showed my shape better than the oversized clothes that I used to wear. I can buy dresses and skirts in my size. I wear maxi dresses or maxi skirts whenever I leave my house now. There are a couple of reasons why I chose the maxi length. A big reason is that I don’t want to be judged by my legs. If people see my legs before they get to know me then  they focus on my legs and not me as a person. Once a person gets to know me then I will show them my legs. Another reason for the maxi length is my lack of pretty footwear.

SHOES!!!! Shoes have been an issue for me all of my life (or at least since I was 12). In my teenage years I was able to get away with just wearing wider widths a couple of sizes too large for me. I haven’t been able to wear pretty shoes since I was about 15. At about 20 I had to start wearing men’s wide shoes that were a couple of sizes too large for me. Then I had a pair made…boy was that a mistake. They looked like huge baby shoes and they didn’t take in consideration that my feet get smaller or bigger depending on the time of day, temperature and my activities. Anyway, that didn’t work. There have been times when I wore orthopedic/diabetic slippers, cast shoes and during my pregnancy I wore grocery bags. I am presently wearing a pair of shoes from an orthopedic shop that they were able to special order for me (and these too are a couple of sizes too large for me and they are men’s wide and extra depth). People are always suggesting shoes for me such as crocs  and different types of sandals. I always get my hopes up but the minute I can’t get them past my toes I feel really defeated (pun intended).

Even though lymphedema does dictate some parts of my fashion style it does not dictate every part of it. I still get to choose the fabric patterns and colours  that  I like, the shapes of the dresses, and the necklines that I prefer. Lymphedema does not hold me back from expressing who I am through what I wear (except with my shoes 😛 ).

Lymphedema and Pain

I just want to state that this is just my personal experience with pain and lymphedema. I believe that every person’s experience with lymphedema is unique and therefore what I feel may not be what anyone else feels. I do know that a lot of doctor’s do not have a clue when it comes to lymphedema and pain. I have met a few that said people with lymphedema do not have pain. I hope they are reading this. Feel free to comment on this post about your own experiences with lymphedema related pain.

I decided to write about the pain because over the last 2 weeks I have had more pain and extra swelling than I have ever had. My life has gotten really busy and my family is down to 1 car so I have not been getting as much leg elevation as my legs like to have.

I live with a constant level of pain on a daily basis, even on my best days. I can actually ignore it. What I feel on these days is just like a mild throbbing headache, but in my legs.

When I am on my legs more than usual, my legs swell more and I can actually feel the pressure of the fluid stretching my skin. When I stand it feels like my skin is going to break. When I say “on my legs” that means when I do not have my legs elevated. I consider sitting in an office chair as being on my legs because, for me, that is just as bad on my legs as standing is. I find that walking does not make my swelling worst. It is much better than standing or sitting.

This week I seemed to reach a new level of pain. I have been on my legs for 18 hours a day without a day off of them. I am having pain without even standing on them. It feels like there are hammers inside my legs trying to break out. The swelling is going up behind my knee making bending them really difficult and causing even more pain. Every step I take makes me hold my breath as I try to manage the pain. Monday night I was in such pain by the time I got home that I ended up getting the shakes and I could not get warm and I felt like I was going to throw up.

Then there are the infections… that is a totally different type of pain. For me, I have been very lucky. I can feel  the infections early before I need to get IV antibiotics. The minute I feel the itchy pain in my legs I start taking antibiotics and it clears up in 10 days or so. Other people suffer a lot more with the infections and  cellulitis than me.

I know that when people read this they are going to ask “Why does she bother to go to work when it causes her so much pain?”. I tried staying home for 2 years and I hated it. Yes my legs were not hurting as much and my house was cleaner but I hated it. I felt like my life was passing me by and I basically had no life. I love being a real estate agent. I love where I work and the people there.  I love looking at houses and meeting new people and helping them sell their home and/or find a new home. Working actually helps me forget my pain.

Do you know what the odd thing is? Most people do not know that I am in pain. Of course my family knows and lately I have let a few other people know (certain coworkers, my trainer at the gym, friends). I have had lymphedema for so long that I can put a smile on my face no matter how much pain I am in.

I, personally, do not take meds for lymphedema pain. I figured that as I get older and my lymphedema gets worse my pain would get worse so I would have to continually up my meds. Instead I use music to ease my pain (other people may use books, tv, movies, etc.). Music can transport me to my happy place and it usually works for me.

I don’t want people to treat me differently so I am not even sure I want to post this…

(after showing  it by my niece Taff (who also has lymphedema and has been told by doctors that it doesn’t hurt) she told me to post it so I did)

March is Lymphedema Awareness Month

March is Lymphedema Awareness Month and I really wish I knew how to make people aware of lymphedema. I am sure my Facebook friends are sick of hearing about it already but I am hoping some people will mention it to other people and so on and so on…

I spent most of my life rarely mentioning Lymphedema. It was just something that I lived with. I have Primary Lymphedema and that means I got it through genetics (my father had it). I did not have cancer treatments, I did not have any major trauma and it is not because I am too fat (as a lot of television shows seem to suggest is the only cause for lymphedema). 4 of my sisters and 2 of my brothers have it as well and everyone seems to have it to varying degrees. Mine is considered the 2nd worst in my family. In my family we get it at puberty (well, we are born with it but we don’t really see it until puberty). Growing up, our doctor just called it having the Bellows (my maiden name) legs and we were not treated for it at all.

I always felt that having Primary Lymphedema was much better than having Secondary Lymphedema because at least I knew that there was a good chance that I had it so it was not a surprise when I did plus I had other family members who I could talk to about it. I can’t imagine how hard it must be for someone surviving cancer and then getting lymphedema because of the cancer treatments. Thankfully the awareness of this type of lymphedema has greatly increased and cancer patients seem to be getting a lot more info and  help with it than they used to.

I posted a photo of my legs on Facebook tonight as part of my Lymphedema Awareness Campaign. Until this past year very few people had ever seen my legs. This year I have showed them a lot. Yes, I wear long dresses and skirts so my legs are not the first thing people notice about me but if anyone asks me about Lymphedema I just show them my legs. I have seen a lot worst cases of Lymphedema than mine and I have seen a lot better ones too (and that is just in my own family lol).

Why is Lymphedema Awareness so important to me??? I am not sure. Yes, I have it but will awareness make a difference? I hope it will. I would love to go to a doctor and not have to explain it to them. I would love to wear a bathing suit or a shorter dress and not have people gasp at the size of my legs and make rude comments about them. I would love for people to understand that I know what I can and can not do and for them not to limit me because they feel that I can not do something. I would love for the insurance companies to understand that they should pay for treatment  because some people have had amazing results with treatment especially if they start early (I paid thousands of dollars out of my own pocket and was reimbursed $250 from my insurance company. My MLD treatment was not successful because I didn’t do it early enough and now my legs have too many crevices for the stockings to work and I felt that I couldn’t have a real life if I had to be bandaged from my toes to my belly 24/7). Maybe if the insurance would have paid then I would have gotten my treatment early enough to work but I guess I will never know and there is always hope that something will work for me. New treatments are being discovered.

I just hope that eventually, with Lymphedema Awareness, the lives of people with Lymphedema will be better….

P.S.  To any doctors out there: Yes it hurts. Some days are a lot worst than others (Many doctors believe that Lymphedema does not hurt…I have met them)

Lymphedema VERSES the SCALES

If you read my last post you know that I have been going to the gym for almost 2 months now. My first Body Transformation Program at Manimal Athletics Training is almost completed and it will end with the weigh in and measurements on Monday.

I hate the scales but yet I am obsessed with them at the same time. I know that having lymphedema means that getting an accurate weight loss number is not going to happen. My weight can vary greatly depending on what activities I have been doing (sitting at a desk for any length of time makes my legs swell) and once summer comes it will be even worse since the heat makes me swell a LOT. I have been doing some office work the last 2 days so I have gained 10 pounds since I weighed myself 3 days ago. I keep telling myself to ignore the scales and that the measurements are more accurate than my weight but as much as I tell myself that it is still the scales that mean the most to me. People see me and the first thing they ask is “How much weight have you lost?”. No one has ever asked me how many inches have you lost.

My goal is to get to ONEderland. So that also relates to the scales. I haven’t been in ONEderland for at least 20 years. Why does this mean so much to me? I should be happy knowing that I am getting healthier and my clothing size is getting smaller. I am always wondering what weight I would be if my legs were “normal”. I look at people who seem to be the same size as me (although I am not great at doing this because my view of my body is somewhat distorted) and wonder what their weight is.

I know I am doing well. I am going to the gym for 2 or 3 one  hour long sessions a week. I am keeping track of what I am eating. I am staying within my daily calorie range and eating much better than I have in my life. I have a lot of people commenting on  my weight loss. I am wearing clothes that are smaller sizes. BUT yet seeing my weight go up on the SCALES is so disheartening…