Does my Lymphedema make my arm look fat?

It feels SO heavy and full today. I have been nonstop for the past month+. Not enough sleep. Too much working. I'm so glad I am now wearing a sleeve during the day, as I know it helps so much.

In fact, I get compliments on them. People ask where they can get them - they think it's a decorative thing! *I wish*

Maybe my lymphedema will force me to rest more. I caught a cat nap earlier, and I fell into a full on dreaming sleep, in 30 minutes. 

Interestingly, I think my arm looks smaller, now that I wear my sleeve. I mean, when I take it off, it looks kind of puny. My other one? I work out, and it does show. Lefty does just as much work, but somehow it looks smaller. The good news is that it looked that way before the lymphedema set in (one of the signs for me was when they looked even, and then it looked bigger - since I'm a righty, it was always the bigger arm). So, yes. I'm grateful for that. Of course, when I wear the sleeve, I hate how my arm DOESN'T look rocked. Muscle-wise, anyway. It looks like a girl arm. Like, a skinny fat arm. You know what I'm talking about - the slim girls who can't lift a pencil. Soft, mushy arms. I know there are worse things, but I like feeling AND looking strong. I want someone who is potentially out to mess with someone to look at me and think, "Hm. That one looks like she could put up a good fight". Yup, I always want to avoid a fight. 

So, here I am. Life sentence of a sleeve/gauntlet, exhausted beyond belief! Exhausted, delirious, and today I actually skipped the gym. Other than traveling, I'm very consistent. since I only had about 3 hours of sleep last night, my pillow and I needed to be BFF's. Imagine, if I'd gone to the gym at my regular time, I would have had 1 hour of sleep. Yes. I do believe I made the right decision.

Is it PTSD, fear of the unknown (same thing), or having a teenage daughter (same thing)?

Sigh. It's been a long time. Every time I think of blogging, I'm too busy. I have barely seen my husband in a month, and yes - we live together and love each other!  2 freelancers are sometimes not even ships passing in the night. But, we love what we do. I wish we made more cash for the splash, so that we could afford more time together (eh, maybe a coffee once in a while?), but, we agree on our life choices and will never change ourselves or each other. So, here we are. Perhaps it's one reason we're so in love. A lot of first dates!

Got more lymph sleeves, from LympheDivas - these are way cuter!!! People ask where they can get them (without lymphedema!). People think I have full sleeve tattoos, or that I have a quirky but cool sense of style. Maybe I do - but this is necessity.

My teen daughter? She's an amazing person. But, she's a teen. So much of my time home this month has been spent Momming. Hubby is an incredible parent. Ex hubby? A disaster. In fact, every time my daughter returns from his place, we work so hard to get her as close to human again as we can. But, I divorced him. We teach her, and show her affection and love her, discuss values and morals. And we pay for everything. But, we make our choices in life, and hubs and I choose to be good people.

But, anyway, it's so hard when you're tired, in pain, overworked, traveling too much, and not seeing your loves enough. Fuses are short. Tempers flare. And other catch phrases that describe the situation. But, here we are.

I head out again this weekend, and then next week am slammed again. I'm not sure exactly when I'll rest, but I'm hoping before my tryptophan induced Thanksgiving nap. Which actually doesn't happen to me, since I am not the biggest turkey fan (that stuffing, though!!!)

My acupuncturist left the hospital. She has saved my life. The whole place is crumbling, and the main reason I've remained a patient there is for acupuncture. Now? My oncologist is ok, but his assistant is a total idiot, and rude as hell. Can I find a new oncologist at a friendly place with integrative therapies? Can I also find a unicorn to ride to all of my gigs on? I may need a pegasus, but then - what's border control like when leaving the country? If it smells like pegasus droppings, I'll take a plane. Though, some of them WISH they could smell as good as pegasus droppings.

Besides magical creature dung, life isn't awful. Found a massage place nearby where they actually do a nice job, cheap. The best part, however, are the signs on the walls. "NO HANKY PANKY!"  It makes it more charming. And less disgusting.  Been there twice, and am definitely a fan. The first time was a 60 minute reflexology session. Heaven on two feet!  And deep!  Next, full body, sans arm. She asked if I got hurt, and when I told her it was lymphedema, she totally seemed to understand. Both clinicians were good instinctually, and I'm so happy they're close and cheap! Did I mention, close and cheap? The only thing I will say about those places - bring earplugs! Curtains partition the rooms, and sound travels, no matter how much Kenny G they're pumping. Plus, you need earplugs if that's your only ambient noise. Seriously.

Wishing I had better news

So far, my insurance has rejected my appeal for a lymph specialist. Because, clearly, they would rather pay for a lot more crap down the road if I have a giant arm.

I've been taking matters into my own, incapable hands. One of which is numb a lot.

If I wear my sleeve/gauntlet idiocy starting around 4:45 as I leave for the gym, and leave it on until night time (yes, I take it off to shower, and yes, I take the gauntlet off and stuff it in my bra as I use the bathroom and wash hands - glad it's not a one piece!), I feel much more like me.

Except, I look like an idiot with a weird arm.

I can't believe nobody has come up to me declaring their firm belief that one should not wear just one athletic sleeve. You know. They're all the rage. Compression sleeves for people without lymphedema.

Meanwhile, back in my world, these things are expensive. I wish I could just go buy an athletic sleeve. I could get 5 for the price of one lymphedema sleeve. The gauntlet is a separate purchase, but still. I don't have a therapist (can't afford that price tag, nor should I have to, since I have "good" insurance) to tell me what to wear. But, I don't want to injure myself of make the condition worse. Because it sucks as it is, trust me!

Oh, my aching lymph...

Well, I called a few places, and nobody is in my insurance network. Lymph is big business. One of the best, so I hear (and I did meet her a few years back), is a whopping $250/session. Out of network. Also, out of price range. I'm having a heck of a time finding a reasonable costing lymphedema specialist who is attainable on a regular persons budget (keep in mind that I am a musician, so my budget is much lower than most!)

I know I have it. I know I have it. I know. I have tried wishing it away, hoping I could fool my body with my mind. My body is way too smart and/or stubborn to change. The pressure and pain are real.

So, in my frustration, I tried on my sleeve/gauntlet that I got as a preventative measure. I wore it about 15 minutes. It looks dorky as hell. It makes it impossible to type. And, it felt wonderful.

Crap.

I didn't want it on too long. I did some self massage to hopefully drain some of the fluid and then popped it on. Showed hubby. I need someone to bedazzle something to put over it. Stat.

I have a plain black and a plain purple. I mean, what's the point of having a dumb thing to wear for a medical reason if it doesn't look super crazy? Plain? Me? ME?

Sigh. Anyway, it's been off about 5 minutes and I'm already feeling it again. It was my little experiment. I was right.

So, the search continues. I need someone to help. I am hoping to see my acupuncturist next week, before I get on a plane. Of course, no needles on the affected side, but she can certainly drain some of that energy out. I mean, for real - this does not feel amazing.

Also, think of the tan lines.

I hate looking up lymphedema online, because I see these horrendous, giant limbs. Infections. Grossness in general. I don't want to be that. I want to be me. I'll accept the fake boob, the scars, the lack of a nipple and a crude tattoo job by my surgeon to trick my brain when I look into a mirror from far away. Got it.

But a giant arm?

NOOOOO!!!

I found this online. Because, you can pretty much learn anything on Youtube. It seems legit. I tried it. I actually felt a little better, but perhaps because one of my cats sat next to me and rubbed my arm as I followed the destructions. I mean, instructions.

Who knows how bad it will get. I'm hoping that with my determination, OCD, and will to not have a giant, mutant arm, I will somehow keep it to a dull roar. It feels all sorts of f'd up. Is this my future? Eek. But, oddly, my arm feels as heavy as this one looks.

Cancer Center - it gives me more cancer!

Finally went to see my oncologist today for my arm worries. Of course, it didn't flare up. He said I looked great. I told him everything. He said, next time it flares up, call me and I'll see you or you can measure it and send photos if you're not in town. Cool.

But the before and after? A hot mess.

I showed up early, as always. Because people are not smart.

I almost hate that I love my doctors. But, I do. The security guy couldn't find my name on the appointment list, so he just told me to go back, which really helped to make me feel secure. Apparently I was on the list, but they said no labs were indicated. Thank GOD, though that's never happened before. Saw my oncologist, talked about my arm. Of course, for the first day in a week, I didn't have a flare up (and am, of course, having one as I type). So we measured my mammoth biceps. I hope he has recovered from the shock of the gun show. Hah. Actually, he said "Don't flex!  I know you workout!" Love him. He knows me so well. He knows about our cats, kids, careers, likes, dislikes... oh, I wish he had a private practice.

He said he ordered bloods and pointed at the screen, so back out I went to the front, after unsuccessfully trying to book my next appointment for lack of staff at the desk. Dude could not spell my name, which is simple. I don't mumble. I found my name on his list for him. He checked me in and said to wait for the vampires, as I usually do upon entering, before my appointment. 

Sat there, a few minutes later someone popped out and asked my name. They disappeared for about 10 minutes. So, I took a walk back to the front (security) to see what was going on, which was empty! Again, super duper security. So I went back, asked them what was up, and they said they were trying to find the order. 

I then walked back to my oncologists office, and nobody was there. A patient, who also works there (has cancer, but works in a different division) , was talking to me and another lady - we had a great discussion about sugar and diet with cancer (which docs seem to avoid, and yes, the woman who worked there didn't know a thing about this stuff, so a lovely woman and I got into a big discussion about it all with her, at least that was a good thing that came from this hellish cancer day!)... and she was still waiting for her appointment. She asked what was going on, since I'm sure I looked a little pissed off. I told her what happened since I had walked in the door. She said, if the doc wanted labs, I should really wait. I told her if they wanted my blood, they'll get it next time. IF I can make another appointment! 

Do I even want to? 

I'm definitely calling him tomorrow. We have a good relationship, I'm probably one of his more open, honest, and crazy patients. So, I now know what I knew going in. I need to monitor my arm. Duh. He said he would like me to return during holiday time - but since there was nobody, anywhere, to schedule that, perhaps it's a sign.  Maybe I am my best doctor. I mean, I'm prescribing all of my own treatment now and paying out of pocket. How much should I charge myself for this? Is there an online degree I could get, so I feel more official? 

All we can do is our best - but most of those people do their absolute lazy-worst. I also want to note that I like the nurses there. Each one, they can handle me. I had a parade of fun health practitioners checking all my crap. Why are these very important health care centers failing so badly? At this rate, I don't want to go back for a few years while I cool off. I know it's not smart of practical, but I don't need stress. I already have Cancer - it's built in!!! I will be calling my oncologist tomorrow morning and will tell him all of this. And that, even if I don't come back for the holidays like he wants, I may just bake something for him anyway. Because, it's not his fault that they are nincompoops.  

And, my arm progresses to throb and feel heavy. Lord, why didn't it do that a few hours ago???

One week later...

Been not completely awesome since my last post - I checked to see how long ago it was because I remembered feeling like crap on a cracker. It's been exactly a week.

Woke up this morning feeling not great, but as the morning progressed, in utter pain. In my gut. Like, cramps. The worst PMS feeling ever, including my mood. I did make it to the gym, and since last night I felt all lymphedema-ey in my arm, I took it light. Cramping. Finished weights somehow (wimpy, that's how!) and plopped on a recumbent bike. Cramping. Burned a few more calories, and made it home with hubby.

We've both been overworking, and it's stressful. Put pain on top of it, and it's a disaster.

He went for a haircut, even though he looks like he has a military buzz (which I don't mind, but I wish he could go less frequently, or let me buzz it!) and I laid down on my bed of nails! It always feels good/tortuous. Usually, I can't take it for long. I fell asleep. Hard. Woke up, not because I was in pain, but because I got a text from a friend I had to meet today. It was definitely helpful.

But, while I was situating myself ,  my larger and quite lovable cat climbed on my belly, as he likes to do. He stepped in my hip crack (groin) area and I felt a pain. Moved him to safer terrain and felt a pebble. Yup. A swollen lymph node. Is it related to my lymph issues in my arm? Is it trying to take the burden of draining where 6 are missing a bit too seriously? I've had this before, in my life. As a younger lady, without insurance, I'd never had it checked. When I learned about lymph, I never worried and figured it was helping me get rid of the bagel/candy/chocolate I might have had that day.

Do I worry about this? I'm so tired of medicine. What will they do if I have a secondary cancer? Start killing me again? Wouldn't I rather die naturally? I watched my mom go, and she spent years of being a pincushion/poison center/guinea pig, basically wanting to die after all of that bs. I had a nice taste of it though my treatment. I also wanted to die.

This cramping today made me want to basically kill anyone. Anyone. Hold the door for me? I will have to kill you. Smile? Kill.

So, hubby and I, when my tummy started to calm from my nail bed nap, went to Bed Bath and Beyond to return an item. I hate having dead stuff around, it's bad energy. At least if we bring it back and get our store credit, it makes life better. One less thing to deal with. Right?

Eh. I couldn't have chosen a worse day. In the store, he asked if we have to return it first and then go to the register. I told him, I'm pretty sure most stores let you exchange at the customer service desk. He asked me again. And again. And once more. By this time, I said, "I don't work here". And he got mad. Sure, if I said it the first time, but here I was, fighting to stand upright while looking for stuff for him, and he doesn't stop. I said, the general rule that I know of in retail, is that when someone returns an item, they will be able to ring up a new purchase even if it's totally different.

Which is true.

And, it was still true today.

I sometimes wonder if hubby likes to irritate me. Like, he is so calm and I'm the wild one. Perhaps that is true in general, but dang, dude. I feel like I'm going to drop dead, and you keep harassing me about a store policy in a store I've walked into maybe 7 times in the past 15 years?

I know why my mom gave up. Her partner was nothing more than a moron with a bad attitude, no social graces, and was just disgusting. My partner is good. Nobody is perfect, but dang... customer service will exchange for you.

We still need a hair catcher for our bathtub, which was one thing we didn't find. The other one disintegrated between my hair and my daughter's hair. A bit of a Lady Godiva vibe in this house - except for Military Weekly Cut.

I love him. But sometimes, I don't know what to do. He probably doesn't either, and that scares him. He wants to fix everything. I want an ear to listen and a heart to love.

Yeah, I know. I should call my doc. I planned on calling my oncologist regarding the arm issues. I'll tell him about the groin marble. But I swear, if I have more cancer, I'm going to just Cheech & Chong until the end. I wish my mom could have died feeling no pain, only goofiness. I will not go down like she did.

Maybe a hot salt bath will help. I had a clementine and a bunch of kombucha and golden milk, a little yogurt - just now a home fizzed club soda with some grape stevia - I just want stuff that won't make it worse. I guess I'm, except the clementine, on a liquid diet today. It always makes me nervous when I don't want food, because I'm always hungry. It's my thing. But a day off of chewing too much is good. Oops, I forgot that I had a piece of persimmon bread that I had baked last night. Sigh...

How can I explain this feeling of WHAAAAAAHAPPA????

It comes and goes. It's a feeling of nausea mixed with I want to lay down for a week.

I think, sometimes, life gets overwhelming - and now that I'm a chronic patient, I've somehow programmed my head to stop overdoing it. Sometimes I have no choice, and I magically get through it, only to collapse at the finish line. And retreat into my mode of not being able to move.

Feeling like that, this weekend. Made it to the gym both days. Today was more productive than yesterday (which was my daughter's birthday, so I'm glad I could put on a spunky face and have fun with her). As soon as she left to see her dad? COLLAPSE.

Today, went to the gym with hubby. Didn't feel great, but since I had to skip two days this past week, and, he's such a badass and he deserves a month of hiding under the covers and crying for all that he has done and continues to do, I went. I did ok. Got home, showered, did laundry (which I have not done for years - no joke - but since he's so busy I volunteered, and somehow, it all came out in the wash!) Walked him to his bus to go to a meeting out in the boonies, and felt foggy headed. Stopped by an amazing outdoor flea market. We have tons in our neighborhood but this one was actually enjoyable. Almost bought a vintage typewriter - I have a thing for those and haven't gotten one yet, but I cringed at the thought of even hauling it to the corner for a cab. That's how weird I felt.

Walked to the grocery store and got a few things. Got home. Ate a clementine and drank a huge amount of water. A bit better. Cleaned the fridge, because it wigged me out. And now, I sit thinking I should at least go to the garden and pluck some offending weeds and see how the tomatoes are doing. Maybe grab some basil. It's safe enough, it's just across the street. If I feel awful I can come home.

I honestly believe it's my body saying "Don't do this to yourself again, dummy. The cancer can't kill you if you're feeling good. Rest."

Promise. I will make a delicious dinner (roasted organic chicken breast and salad with a little feta) for us, see hubs off to his gig, and watch a movie in bed. It may do me good to go to the garden and ground in the soil with the plants and junk. You know. Back to nature in the big city. I always feel better, but  today feels harder to motivate. I'm amazed that I walked about 40 minutes without having some dramatic episode of collapsing on the sidewalk. What in the heck is this, actually? I am tired of docs.

Maybe it's my supplements. I take a day off once in a while, and decided today was a good choice. You know. Cleanse out ye olde system and what not. Been doing my kombucha, which has been brewing amazingly well.

If I feel foggy tomorrow, I'll call my doc. At least the nausea has passed. I'm sure I've felt like this before cancer, but now - EVERYTHING is cancer in my mind. Just found out our very good friend has Multiple Myeloma. I'm not too keen on the whole chemo thing, but that's what they say they'll do. He's too old for this. I wish I could be his advocate, but he has family. I'm just hoping that they think and don't just follow the herd. We think of him as family, and if anyone does anything to not help him for the benefit of profit, I will be kicking some ass in some way. I hate this. All of it. I know he won't do a lot of the stuff I do, but the medical community is not as helpful as they are money-hungry. Which makes me want to vomit on the entire "industry". Maybe that nausea is coming back, after all. But, to the garden I go - to connect with nature, and hopefully no bugs.