Kicking cancer's ass - day 1882

Yesterday I posted 10 things I wish everyone knew about lymphedema.  How much of it did you know?
Today I would like to share 10 ways my loved ones can help and support me (or anyone dealing with lymphedema).

1. Lymphedema is very overwhelming to me.  My automatic response to anything is to over-research whatever it is.... so I understand a lot about this disease.  That doesn't make it easier to deal with the realities of living with it.  So if I downplay it, I'm not making light of my condition.  I'm trying to make you - and me - feel better about it.
2. My arm is painful sometimes and uncomfortable all of the time.  Often the simple, everyday things are more difficult for me.  Drying my hair, washing dishes, typing, even driving.  I can still do most things.... but it takes more time and effort on my part.  You know how it's more difficult for an overweight person to do things because they are carrying a lot more weight?  It's the same concept.... it's more difficult for me to do certain things because my arm is often sore and it's heavier than the other (especially when it's wrapped!).
3. Could I stand to lose a few (or thirty) pounds?  Sure.  Would that help my lymphedema?  Not really.  My left arm is significantly larger than my right.... but it's not fat that will go away with diet or exercise.  In fact I have to be careful with what exercises I do so I don't aggravate it.
4. Lymphedema has made me VERY self-conscious of my arm.  I do not wear sleeveless shirts.  I don't even like most short-sleeve shirts.  I have to wear loose-fitting long sleeve shirts so the sleeve isn't too tight.  I can't wear my wedding rings on my left hand.  I can't even see my knuckles on that hand.  Wearing compression garments hides the puffiness, but the bandages make it obvious something is wrong with my arm.
5. Wearing compression garments for lymphedema is exhausting.  Have you ever tried to pull on spanx?  Try that on your arm (wrist to shoulder) and then a skin-tight glove.  And that's the easy way out.  Full compression involves a stockingette, wrapping a layer of cotton around my arm, then four different ace bandages.  If I don't wear my glove, then I also have to add in long rolls of gauze that wrap around my fingers.  Wrapping takes forever.  Unwrapping isn't much better, and then I have to roll everything back up so it'll be ready for the next use.  
6. Right now I'm going through a low period because of my lympedema.  I'm just SICK OF IT.  Most of the time I can shrug it off.... I mean, I can't change it and complaining doesn't make it better, right?  But sometimes it is just.... difficult.
7. My "off the rack" compression sleeves cost $80 each.  I have two of them.
   My "off the rack" glove cost $125.
   My custom sleeve and glove (which are supposedly better) cost over $300 - after insurance.
   Those garments are supposed to be replaced every six months.
   My Flexitouch pump is costing me $36 a month for three years - after insurance.
   The supplies for bandaging - cotton padding, stockinettes, gauze, ace bandages, tape.... all of that is out of pocket for me.
8. That might sound ridiculous to you, but it's true.  It takes me 15-20 minutes to wrap my arm in the morning.  It takes about that to unwrap, and then roll up the bandages.  If I use my pump, that takes an hour every day.  All of this doesn't include the exercises and self-massage that I am supposed to be doing to help manually move the lymphatic fluid.  
9. I wouldn't say that dealing with lymphedema instills the fear of recurrence.  The thought of breast cancer returning is never far from my mind.  I do often feel guilty complaining about dealing with lymphedema when others have it worse, and considering I have faced much worse.  But it is what it is.
10. My story isn't unusual.  The more lymph nodes removed, the greater the risk of lymphedema.  I had 24 nodes removed, so it's not a surprise that this happened.  What's unlikely is that it didn't show up until several YEARS after my surgery.

I'm having surgery in a few months which will hopefully improve my lymphedema.  It's not a cure, but I hope it helps.  The surgery isn't very intrusive, but the recovery doesn't sound very fun.

In the meantime, I need to do better about bandaging my arm.  That works much better to reduce the swelling than simply wearing my sleeve and glove.  But it's a pain, and very time-consuming, and I'm lazy!

I need to get back to using my pump every night.  It's a hassle, but it helps and I'm paying for it regardless, so I might as well!

Now you know some of the reality of my every day life with lymphedema.  

I didn't post all of this to get sympathy.  I know it could be worse.  Others DO have it worse.  In the grand scheme of things, lymphedema is annoying, uncomfortable, expensive and frustrating... but not scary or life-threatening.  Once my pity party is over, I'll put my big girl panties on and carry on!