GRRRRRRRRR I HATE LE..........
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Kira, I'm thinking about you today, wishing you a speedy return to energy and good spirits after the depleting experience of colonoscopy prep and procedure.
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It's DONE!!!
The prep had me up all night....
This morning, the nurse immediately ran to get a sign for my arm, only it read "Do not use Right arm"--she switched it to the left.
I wore a cotton stockinette, the g-sleeve, and a finger wrap.
The life saver last night was the Solaris. I don't usually use it, but it had to come off many times for me to wash my hands, and it worked very well.
My onc had told me how nice the facility is, and they were--and--no polyps, and the GI doc told me "you have the colon of a 30 year old"--which made me feel strangely proud.
Yesterday: I had a horrible day at work--note to self, do not try and prep at work when you have an insane boss. Poor Binney answered the phone and had to hear my crazed rant. And it was crazed.
Today, after some versid and fentanyl and the holiday weekend ahead, I'm just going to take it easy and await my daughters and the slightly delayed seder for tomorrow.
In the midst of a terrible, horrible day, my DD called with landlady issues. I thought the top of my head would blow off.
For the exercise thread: as I paced the house and did the prep, I kept feeling like I had to ride the bike, but finally decided it was a bad idea.
Thanks for all the good wishes.
Happy holiday weekend.
My DH went and got me a ginger scone (I love ginger) and I realized it was the first solid food in 2 days. And he brought coffee, which killed the caffeine withdrawal headache. And he thought the photos of my colon looked like a 30 year old...
Kira
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Dear Kira: I think you got enough exercise with all the 'running' that comes with that prep routine!
Congratulations on having ANY body part like a 30-year old, and do enjoy the seder and all the food that comes with the celebration. So glad you're on the other side of the procedure.
Carol
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When I did my prep, I took my laptop in the bathroom, put it on the clothes hamper and sat on the throne watching movies so I didn't have to run. Good thing i was at home alone.
Sheila
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Cheers to your 30 year old colon Kira.
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Kira--I cannot even think you thought of trying to ride the bike on such a no good, terrible, horrible bad day (or however the book goes). I would have passed out with hyperventilation from all of the deep breaths I would have been taking all day.
Now have a nice relaxing day today and enjoy the seder--and yes all of the good food with it. I still would probably stay away from the bike for another day.
Wow if you have the colon of a 30 yr old maybe the other body parts match it!
Are you in the chocolate eater club? If so a big piece of chocolate is in order--or at least a big ginger cookie.
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Becky, ,that child's book was a favorite,I just googled it and it was Alex's Terrible, horrible, no good, very bad day. My kids loved it.
My SIL is a second son of first generation Chinese parents, and another favorite was Tikki Tikki tembo no sa rembo, where the mother favors the first son, and is likely very politically incorrect, but my SIL has a great sense of humor, so we quote it to him....
I slept in, and feel much better. Wrapped last night, and the arm/hand seem no worse for wear.
Looking forward to the seder.
Here's my question: If I have the colon of a 30 year old, and he said come back in 10 years, then it would only be 40years old, and too early for a colonoscopy.....
Kira--at least one body part hasn't betrayed me.
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LOL, I doubt he'll go for it but hey, worth a try.
I had to Google seder.
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Marple, don't worry, those Hebrew words aren't in common use.
Last weekend, a neighbor wished me happy palm Sunday, and I had no clue....
My SIL's parents said that all three of their children would 1) be physicians--all went to med school and 2 graduated, and 2) marry Chinese: none did and the oldest, converted to Judiasm when she married, and my SIL married into a Jewish family and celebrates holidays with us.
So, lots of seders in their family now.
We use a children's hagadah--we have memories of serious, long, Hebrew only seders from our childhood. Kind of embarassing, but it's become a family tradition, from our daughters' childhood.
Kira
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Kira, I am chuckling big time about your colon not being old enough for the procedure! And as for the children's hagadah, well, there is a lot to be said about keeping traditions that everyone associates with childhood memories and looks forward to. Reading a childhood hagadah reaches back in two ways--the long-ago history you are celebrating, plus your family history--roots that bring you back together at the seder table year after year. How perfectly wonderful!
I made sweet, bunny-shaped bread rolls that I brought to my trainer and his wife today, dropping them off at the gym. They have a 4-year old daughter who just loves anything bunny at this time of year, and they are celebrating not only Easter with a big family get-together, but also the second birthday of their son, who has Down's syndrome. Whenever I get a little depressed by the nagging issues that come with LE or by looking at my ugly scars from the surgery, I just have to think of these parents and so many others with special-needs children. They are wonderful models for developing patience and grace. Good things to think of in this season of hope and renewal.
Carol
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Kira glad you have such a sexy young colon!!!
Happy Passover!
I cooked my first seder tonight...boy it's trickier than a regular dinner.
I never know what to do with my garments when I cook.... normally I try to wear them for prep and take off when things get messy, but there was so much around the house to do I felt like it was risky.
Have a great Easter all y'all.
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Cookie, I use a sock with the foot cut off to protect the bottom half of my sleeve, and a cotton glove over my gauntlet. That doesn't work well for really wet handling, but I used this get up at a bread baking school for four days, and I was amazed at what did not stick or work its way through that glove. Some women use food service gloves, but for extended work, that may cause your hand to sweat, and I understand that it's not a good idea to be in wet garments. Which of course is the reason why you're puzzling over this in the first place. Not simple, is it?
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When you get new garments, don't throw out the old ones, as they can be used for the messy stuff, then dry your hands and change into good ones. When you're new to LE there aren't any "oldies" to change into, of course, but keep it in mind for down the road. With garments needing to be replaced about every 6 months it won't be long before you have a good supply.
Oh, along that same line, I always write the purchase date of my garments on the inside tag, in permanent marker. That way my collection of old garments can be easily sorted when I wash them.
Just a thought,
Binney0 -
My Jobst gauntlet (ready-to-wear) is unraveling at some seams, even though I wear it only to lift weights (3 hours a week or so) and while flying (no more than twice a week, for six to ten hours). I've had it just since late January. I plan to call the place that fitted me and sold me the gauntlet, as I think it's under warranty. Would you imagine they will let me keep the original, or am I likely to have to send it back to them? Also, are other brands more durable, that I might ask for?
It's tempting to think that grasping dumbbells is extra hard on the gauntlet, but the seams that are giving up are on the inside.
Thanks, for anyone with gauntlet advice!
Carol
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Carol--I had a Jobst gauntlet that had an opening at the side seam. My therapist said to send it back as it should not have that. They let me keep it until the replacement came in. They sent me a postage paid packet to send it back. The second one had a hole in the seam in the same spot! She called the fitter and insisted they replace it. They did and let me keep the one with the hole. I use it for the dirty jobs like cooking.
My old sleeves are way too big since I have lost 60+ lbs. If I wore them as Binney suggested it would be a joke as the top of the sleeve falls down to my elbow. And above my elbow is where I need the sleeve the most! I hope soon to be ordering new sleeves the same size every time. I do have one old one that fits somewhat. It is the start of my collection!
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Becky, it must be a wonderful feeling to look at a too-big sleeve and take it as a weight loss milestone. Not nearly as fun as looking at way-too-wide jeans, but still--job well done!
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Benney...I can't wait to get that extra supply. lol It is no way I can wash them everyday...talking about the leg ones. The bottoms of the feet look horrible and it is to darn hot to wear socks here right now. They also don't dry overnight if I just wash the feet. If my washer and dryer were in the house that would make it easy but no...the stupid man that built these house put them in the garage which is down two steps. gee it wasn't so bad but I do have balance issues now and I don't like going down those steps. grrrrrrr.
I do were my old sleeve when doing a dirty job and I take the gauntlet off if doing dishes everything else I wear the old one for.
Happy Easter Everybody.
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After having a chord under my (lumpectomy) breast break up after 3 weeks of treatment specific to that site, I have developed (or discovered) another chord, very thin under the armpit and hard to locate. Therapist worked on it pretty good and heard one "release" but boy did it burn with all the stretching. It had been sore the previous week or so. Seemed so close to being done with therapy. I've been down to just once a week for about 2 months now. Mine is breast/truncal. Will see breast surgeon and RO for the first time since starting LE therapy. Will be very interested in their comments since BS especially said I was not at risk with "only" 3 negative nodes. Also said I didn't need to worry about needle sticks, BP, etc. However, I won't let them do that side anyway. Seems an easy thing to avoid and any tech or lab worker refuses to anyway. I sometimes wonder if the mammogram I had in November didn't trigger the LE on that breast or at least aggrevate it. Of course I didn't know about it then. but 3 weeks later had an eval and sure enough, had it. SIGH
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@Binney @Carol Thanks for the cooking advice.
I always feel guilty wearing new stuff for housework, but I feel that's when I am at the worse risk of a flare.
I do have my old beater medi glove, which has held it's compression better than the Barton Careys.
Having nothing to do with anything, I have the next two days off work.
Isn't it funny how now my vacations are an oncologist appointment!
Still glad not to be on the road tomorrow.
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Can I just odd that it is sooooo sad that I hate spring. Went to the Easter Parade in NYC today. Wore my fingerless gloves over my glove and a light weight coat and I was hot!
In the winter I wear long black sleeves and my black glove and it's ok. It gets worse in the summer...harder to cover and the beige garments are so hard to keep clean.
I actually ordered one of my gloves in Lavender. I realize it will look absurd, but to me anything beats dirty beige.
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I have my appointment with Binney's therapist, Jane, this Wednesday finally. I still don't have my sleeves since I wanted to see what Jane recommended I order. Well, of course I overdid it this weekend since we were hosting Easter and am having a lot of arm pain today. Other than MLD, lots of fluids and elevating the arm is there anything I can be doing?
Also, lately, I feel like I have a burning feeling across my shoulder blades. Could this be a symptom of LE as well?
Sorry, just have to add a little rant. Over the weekend I tried to explain to friends and family about LE. They looked at me like I was complaining about a splinter in my finger. I now have even more empathy for what you've all been enduring for so long with the total lack of understanding about the seriousness of LE. What do you have to do? Whip about a "worse case scenario full color photo" for them to get it?
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Kate, if you do deep breathing exercises, breath in through your nose, letting your tummy fill with air, and exhaling through your mouth, this helps move fluid. (see Breathing & Moving Fluid thread and also some breathing techniques on the Exercise & Self Care thread - the Hulk) Also, if you raise your arm straight above your head, you can make a fist and slowly open and close it. Remember, lymph fluid is slow and stupid, so don't do these moves too quickly. Another one that can help is called the Queen's wave, and if you raise your arm and turn your hand just like the goofy wave, that seems to help the forearm. The other move that really feels good to me is the cat scratch motion, and all I can say to describe that is to think of the motion a cat would make, or Cat Woman's motion if you can picture her when she does a meow. I try and involve my whole arm and hand, opening and closing hand while moving my arm like a cat. Don't know if this makes sense, but that one and the fist one seem to be the most effective for me. About the burning across the shoulder blades, it could be related to truncal swelling, since the right or left quadrant includes the front of chest, breast, side and back. I think the midpoints are the sternum in front and spine in the back. We had a discussion recently about where the quadrant terminates above and below, and I'm pretty sure the neck is not included, and I think the termination below is at the waist. That back area is tough to reach when doing MLD, but someone ingeniously thought of using a paint roller to gently move fluid in that area downward. I have yet to try this, but several women have said it feels good and seems to work. Hang in there. I know it sucks having to wait when you feel this way. Sounds like you are going to be in excellent hands though, and that is half the battle when it comes to treatment.
Dreading the coming hot weather myself. What was I thinking when I ordered my custom sleeve and glove in black? My therapist said I will be eligible for another shortly, so then I can get get in beige. Wanted me to make sure the first custom one fit before ordering another color. Makes perfect sense. Probably should have chosen colors the other way around, but I am so tired of the dirty beige, too, Cookie.0 -
Tina- Thanks for all the tips. I really appreciate it. Sounds like I'll be wanting to order beige sleeves with the AZ summer coming. Someone should invent a thin cover you could put over your sleeves when doing the dirty jobs like cleaning or gardening. (Though I avoid that second one like the plague during summer here!) Does insurance typically just cover one sleeve in the beginning for each arm or do they cover a spare? Well, off to see if my DH has a paint roller- lol!
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Kate, I think a lot of insurance co's cover a new sleeve and glove every six months. When I'm sure the custom set I just received today fits right, I am going to get a second set. Hopefully I can do it in June or July. If not, I will have to see if I can afford second set myself. Seems like they want you to launder these things every day? My goodness, how in the world does one keep up with that, especially when you can't put in dryer or dry in sun? I have three off-shelf sleeves and gloves, and even with three, I find it difficult to keep up! I guess I will use those as spares when necessary or for dirty tasks.
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In winter I wear a black glove anytime I am out (unless I am wearing a very loooong sleve beige top.)
I often wear a black sleeve.
In the summer the black sleeves can do me some harm during the day. They heat up on me and I get sort of sleeve burn.
Juzo makes a sleeve called Silver (not to be confused with the wiggly "silverwave" fabric I am always touting.)
It has something special in it that deflects the heat. It comes in one, rather suntan shade, and it topped by an unusual striped sporty band. (Kind of looks the the band of mens briefs to me)
The upside of this sleeve is, it protects from the sun, and I think it is MUCH more durable than regular Juzo.
They stay new looking for a really long time. I think the compression is a little less durable, they seem to stretch out a tad more quickly, but they do not pill AT ALL.
For anyone who is in a hot climate it is a great option. My fitter says the product claims to also prevent infection as well, but I really am not sure how that would work.
I really need it even if I am going to be in the sun in the winter. I have had the sun inside a car burn me through a black sleeve and top!!!
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but that's what it looks like 0 -
cookiegal- That silver one sounds interesting. I'm going to have to remember to ask about that one. I have temperature sensitivities already from fibro so I try to avoid the heat as much as possible. (I wonder sometimes why the heck I live in AZ! LOL!)
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Oh, boy, Cookie! I better order that beige sleeve and glove! The compression tank makes me unbelievably hot, and I am dreading wearing a sleeve and glove as well. Arrrghhh!!! I will have to ask my therapist about the Silver, too. Thanks for mentioning.
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Here's a question that increases the degree of difficulty of coping with summer sleeve wear: Does any company make a sleeve that you can wear while wet? I should probably wear my sleeve/gauntlet while kayaking, and DH is determined that we will also do some stand-up paddling this year. I really, really want to try that too!
But both kayaking and SUPing open up the possibility of getting wet (SUP more so than in the kayak, because I have no reason to believe I'll be good at SUPing!). I think Binney has said do not wear a wet sleeve--Binney is ALWAYS right, but I don't know the reason in this case--because it tightens up as it dries? Or is this just because we don't want wet fabric on us for hours (but a wet bathing suit never hurt my kiester!). Is there a solution? Paddling is no different than strength training, i.e. repetitive motion against resistance. I think it will be safer with compression. But how?
We live on water. It is criminal if I cannot be out on it. All you creative LE women--help!
Carol
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Oops, just realized I hadn't read this last page, so I missed the pic of Silver.
Cookie, is the Silver a spiral weave fabric?0
