Skip to main content

Swollen Adventures

Episode LXXXIV - just when you think that you're in control...


Attitude is everything. Attitude is everything. I will continue to be positive... even when things are difficult... I will...



I am still the half full cup...


It seems that activity, heat, and general living can create havoc with my lymphedema. I live in the south... with hot, humid summers for crying out loud. I like to paint. I like to type. I like to be busy. Ok, I like to do more than I should after cancer treatment (such as ripping up the old flooring to lay down new flooring), but I am an active person. I am a lot less active than I used to be, but I want to do some of the things I used too. Plus, I am right handed and my lymphedema is in my right arm and hand. Cruel irony!


 
I think I might have been a hand model...


So last week I went to the medical supply store to get a compression sleeve. Apparently I have the biggest upper arm in the world. Ok, that is an exaggeration... but they made me feel like I was freakishly disproportionate. My upper arm is more swollen than my hand. I know... my lymphedema is worse in my upper arm and arm pit area. I cannot have such odd dimensions that a general sleeve will not fit me!?!?!

Because of my freakishness they said I would have to have a custom sleeve. I was shocked because online there are companies that carry my dimensions (I know because I looked it up after I got home). Of course I was more annoyed because an off-the-shelf compression sleeve is around $100-$150 and the special ordered custom sleeve will start somewhere in the $200s. That does not include the price for the gauntlet (glove). Nothing with cancer has been cheap!!!

Even though I need a more durable medical sleeve I felt less rushed to buy it since my OT ordered a compression sleeve that I can wear on a general basis. So, I will wait to see if the ordered one fits before I feel bad because I have one of the only lymphedema arms in the city that is so unusually swollen that an off-the-shelf sleeve is impossible to fit and they will have to do a rare custom order.


Wrap this!!!


Today I was back to my OT getting my bi-weekly massage (boobie massage) when we noticed my numbers were increasing. With the swelling now traveling more to my hand it was time to get a compression wrap. No more waiting for the medical supply store or the ordered sleeve. She was going to wrap my arm like a compressed mummy.

While the wrap looks like a typical bandage wrap, it is different. The pressure garments are made of fabric designed to put controlled amounts of pressure on different parts of the arm to help move fluid and keep it from building up. The wrap starts at the hand and works up towards the arm pit. Each layer progressing upwards. And each layer is tight, but not cutting off circulation. Underneath and/or on top a layer of compression material is placed for additional compression.


Wrap that arm!


My officially wrapped arm is snug. I mean it is tight and hard to move. I now realize the reason the wrap might work so well is because it limits your usability of the limb. I know that they encourage and you are suppose to use the wrapped arm, but everything was tougher to do. I mean I was shifting everything to my left hand from driving the car to answering the phone to eating my meals to bathroom care... left hand please.


 
Compression on! My poor swollen giant hand!


However, by the next morning my upper arm swelling had gone down a little. My hands still needed some relief so I gave myself another lymphatic massage and then re-wrapped myself to hopefully keep the swelling away. I was told to keep myself under wraps for the remainder of the week and all weekend. I am going to get tired of my limitations really quickly... someone grant me patience!!!!


Look the compression is working...

In my head...


So, I am learning that the more I use my right arm, especially in the heat, the more I swell. I actually have limitations... argh! The frustrating part is damage to the lymph system cannot be repaired. The best things I can do is continue the treatment given to control the swelling caused by lymphedema. The goal is to keep other problems from developing or getting worse... and hopefully I can learn to actually manage it long term.

Things that can make lymphedema worse: heat/sunburn (weather affects me), lifting too much weight (even small weight), repetitive motions (vacuuming, mopping, raking, etc), small cuts, shaving, warm showers/baths/water, undergarments (aka my stupid bra), and definitely NO blood pressure, IVs, needles in the arm!!! Learn more about preventing flare ups - Click Here.

I think I am going to have to really gain a lot of patience. I have daily health requirements that will last for a long time... I am suppose to give myself multiple lymphatic massages. I am suppose to wear compression garments. I am suppose to take medicine. Dang it... I have to be responsible for my health! I am inherently lazy about self care!!!

Every one who knows me is laughing at that last comment because they know how true it is!


“The strongest of all warriors are these two — Time and Patience.” 
- Leo Tolstoy, War and Peace


Episode Reference: Here it goes again, OK go song

Just when you think that you're in control,
just when you think that you've got a hold,
just when you get on a roll,
here it goes, here it goes, here it goes again.

Comments

Popular posts from this blog

More biopsies... where? down there?

Cancer survivors are always wondering and waiting to see if something is going to happen, so it is only natural to worry when something is "off". Then when something turns out to be abnormal more testing and follow-ups are needed. It seems like a continual wave of worries. Sometimes our worries turn out to be issues. Sometimes our worries turn out to be nothing. Either way, we are going to worry... it's just an issue of determining how much and when we should really worry. Finding out my endometrium lining was so thick meant I needed to get a biopsy. What's an Endometrial Biopsy? An endometrial biopsy is a medical procedure in which a small piece of tissue from the lining of the uterus (the endometrium) is removed for examination under a microscope. The removed tissue is examined for cancer or any other cell abnormalities.  Lucky me. Right?  Now I get to go back the GYN only a few days after my initial exa

giving your 16 year old scissors

New Traditions Losing my hair - it's going to happen. When I did this in 2013, I waited to cut my hair once I was further in treatment. I didn't want to do that again. I didn't want to do it while I felt sore and bad. This time, I wanted to get rid of my hair before treatment.  Since I will have now done this more than once, it can be considered a tradition: cancer haircuts by my kids . Last time I did this, the kids were 6 and 13. So, this time around my son (23) opted not to cut, but watched some.   However, my 16 year old daughter leapt at the opportunity to cut my hair. Even though 10 years have gone by, she had to adhere to a few basic rules. Basic Rules: 1. Do not cut my ears. 2. Do not cut your own hair. 3. Do not cut anyone else's hair. These rules still hold up and are the general agreement we make before I put scissors in my kid's hands to chop on my hair!  And the tradition isn't the same without going outside (weather permitting) and listening to our

PINKTOBER

I love fall, it is my favorite time of the year. Instead of fall colors, I am surrounded by pink. Everywhere I look I see breast cancer paraphernalia being marketed and displayed. Companies look charitable. Social media is ablaze. The world is turning pink. I live pink. It is not just a Pinktober thing. Breast cancer has infiltrated my life, it is here year round. Pinktober is a double-sided sword for me. On one side I am grateful to whatever it takes to get people motivated, involved, concerned, donating, caring, or active in the cancer community. Then there is the other side, the part that makes almost all breast cancer survivors cringe… the blatant misrepresentation and misuse of all things Pinktober. Ironically, the whole breast cancer awareness month was created by a drug company. October was labeled National Breast Cancer Awareness Month where pink ribbons and merchandise began being sold without any regard to education or awareness. Breast cancer activists, like the fight