It is so hard not to give up.

*swims with special cyborg legs*

OH SHIT, OH SHIT, OH SHIT. I got signed up for the poooool. I got my pool schedule. Hopefully swimming Wednesday!!!

*dusts for cobwebs*

Little update:

My wound has finally healed! I don't know when I'm going to get in the pool, but hopefully it will be soon. I can't wait to be exhausted.

All of my measurements are down, but I think I've hit a plateau. I think we should start wrapping my thigh soon so the measurements will continue to go down. Eventually I should be able to wear a thigh high stocking instead of all the wraps. Oo-la-la.

My nurses/therapists have all been trying to help me get my benefits. One of them wrote a really nice letter for me. Included with the letter was a story about a guy with a similar story to mine. He was in a car accident that crushed his legs and he had to go through a full year of therapy. A whole year? God. I can't imagine a whole year, let alone my whole life dedicated to taking care of this. But that's exactly what it is. A life long battle with wraps and stockings.

Mmm, yeasty.

I had to go to the Bentonville version of Highland Oncology to see a nurse practitioner about my wounds. I had to give blood, which is always a pain because I'm a tough stick(llooolll). I also waited there for fucking EVER. I feel so bad for all of the people there. :(

I still keep getting these little pockets of fluid under my scars. It is so annoying because that pushes the day I can get into the pool back further and further. Also, my main wound is yeasty. Probably because it is always moist and always wrapped up. I have to put this anti-fungal cream and take a serious dousage of Diflucan.

I'm still here!

My appointments have been really sporadic lately because I've had some trouble with billing. Basically instead of it costing 30 bucks every week, it would be 30 every DAY that I went. That just won't fly. Luckily the nurses HONESTLY and GENUINELY care about me and contacted my insurance company. The insurance company agreed to pay 80% of the daily bill! I can go atleast 4 times a week now. AWESOME NEWS.

I don't even know what my measurements are because I haven't been to the therapy in so long. Tomorrow I have an appointment at 1:30 and Wednesday at 9:30. Hopefully I won't have to do any yoga, it killed my back last time.

2X THE WRAPS!!!

Measurements on the right leg:
Foot and ankle are the same.
Calf is down 2 cms.
Thigh is up 2 cms.
I'm not really surprised by the thigh being up. By wrapping higher up on my leg, the fluid is getting redirected into the thigh. Honestly, I rather the fluid go up the leg and not down into the wounds.

Measurements on the left leg:
Due to the new foam pack being placed under the hose and on the scars, my ankle and toes are swollen. Minor set back. Although, now both legs are wrapped. The left one is wrapped to a much lesser extent than the right.

I have no appointments until Monday. That is also when the new Lymphedema clinic opens up, which is where I will start going for now on. I'm excited to have a fixed appointment spot!

My Knee Can Suck It. Hard. And Long.

My right knee is clearly a Nazi. It decided it was going to make a little pocket of fluid, then burst open, and then make it to where I can't swim until it heals. FUCKER. Even my other wounds are like "Hey asshole, DICK MOVE."

Speaking of the other wounds, the big angry blister has healed over and is gone. My 4 year old wound is so small, it looks like a teeny, tiny sliver of an incision. If it wasn't for my knee, I could have been in the pool by Friday. "Knees, the assholes of the legs." -Me

With the knee opening up, they decided to wrap a little higher. I can't lift that leg on my own, so they had to lift it for me. And they had to lift it even higher today, which killed my hip. It hurt so bad, but I didn't want to complain. Who wants to lift a big, fat girls leg anyways?

My left leg was up a little today. So now I have to wear a foam pack under the gosh damn "support hose." A.K.A Ugly old lady stockings that constantly fall down and are a bitch to put on. But hey! They are toeless and flipflop friendly, so I can't complain too much.


This is my left ankle. I don't think I've ever shown anyone. It hurts all the time and is really ugly. Stupid, ugly scars.

No appointment tomorrow... so far. They said they would call me if they had an opening. So. Tired.

On break until Monday

Alright, so after a crappy weekend my calf finally went down a few CMs and my wound isn't leaking anymore.

The appointment my mom went to wasn't bad. I was so afraid that they would make her feel guilty and tell her she was doing a crappy job. Luckily they didn't and she got a great refresher in massage and the art of wrapping.

I have NO appointments until Monday. This means my mom and I really have to stay on the ball with wrapping. No going unwrapped for a full night or afternoon. I just backtrack way too quickly and I am not willing to let that happen again.

:(

Oi, what shitty results. We had to wash and hang dry my bandages, so I wasn't wrapped over night. My calf was up 7 cms, which caused my 4 year old wound to have fluid pool and eventually drain out of it. My foot, ankle, and thigh were okay.

The fluid worries me. This could mean my wound is tunneling again and I would need debridement surgery. Debridement is so painful and the hole it creates is frightening. With my last debridement I could comfortably fit a baseball into the hole. I don't know how they could wrap me with a wound that large.

I'm also feeling really guilty about my mom. I think I make her come across as not caring about this whole process. It is the exact opposite. I don't know what to do. When I get in that room, I feel so much pressure to be positive and to be responsible for myself that I make it look like my mom is the fault of my regressions.* She's going to my appointment on Wednesday and I'm afraid of what they are going to say to her. I don't want them to make her feel bad because she doesn't need help feeling guilty about my legs.

No appointment tomorrow, Thursday, or Friday because my Grandma is returning to Texas to get some of her things. Wednesday's appointment is for 8 AM. That's right. 8. Fucking. AM.

All in all, I am not looking forward to Wednesday.





*Thanks, Robo. I hope I used that right.

Scabs and Centimeters - Yum.

Measurements:
Down 2-3 CM in ALL places. That's right, homeslices. I even unwrapped before going to bed to prevent my foot from losing circulation.

SCABS! SCABS! I HAVE SCABS! GLORIOUS SCABS! How attractive is that?

Since my heel is getting really sore, they had to add some extra padding and wrap my foot a certain way. It still hurts, so I don't know what they are going to do for it. We'll see!

Finally, an appointment in the afternoon. I don't think I could get up at 7 again. How do you people do it?

So sleepy

Okay, so this weekend was kinda crappy and I didn't get the results I wanted to today.

Measurements:
Thigh - Same, which is surprising because we've only been wrapping the lower leg. This means the fluid is moving up on its own.
Mid calf - Up 2 cm.
Ankle - Same
Foot - Same

Yesterday they didn't have room for me. They are so unbelievably busy all the time. I was also half asleep when they called and told me what time my appointment was for today, so I had to wake up super early today and verify the time.

My wounds are almost completely scabbed over. They are going to be beautiful scars in no time. After they finally scar over, I can get in the damn pool and lose weight. Stupid fat cells and their water retaining ways.

So they had a an observer come in and watch them wrap me up today. I think its great that more people want to go to school for massage and wrapping. They honestly save lives. It must be wonderful to make people feel normal again.

When I got home today, our power was out, so I just went in my room and fell asleep. I kept waking up because my heel was burning. I think that means the wraps are too tight and my circulation was getting cut off. I have a feeling that I'm gonna have to wake up in the middle of the night and unwrap. Unwrapping takes like 30 minutes because I have to completely roll everything back up. *falls asleep all tangled up*

Also, that "gel pack" is honestly just a bunch of cut up foam in a net stocking with both ends tied up. I wish I knew why it was called a gel pack. Maybe I'm just not getting it. :P

Steps Backwards

I needed people to leave my mom alone this weekend. I needed her to not be exhausted beyond belief. I needed people to leave us the hell alone for ONE day. I needed her to have just a little free time to help me wrap my legs because I can't do it alone. That's all I wanted. But my grandma is really stuck on trying to renovate my house so we can sell it. My mom works all day and comes home and has to work on stripping wallpaper, or pulling up carpet, or painting walls. So yeah, she's exhausted. She can't stay awake to help me wrap my legs.

I didn't make any progress this weekend. Infact, I took a few steps back.

Day 4

I haven't gotten up at 8 in a long time. Groan. Anyways, I noticed a few things while de-mummifying myself. I forgot the foam! How could I forget the foam? So as you know, after the bandage padding material is added, the other stretchy protective legging/wrap thing is put on. On top of that they add this foam material. Muy, muy importante* for compression.

After de-mummification, my lower leg is noticeably smaller and my thigh is noticeably squishier.
On a bad note, my wound bled like crazy and I'm worried the skin around it is getting yeasty. May need some Diflucan soon.

Results of wrapping lower leg for 1 night:
Thigh - Up 4 cm
Mid Calf - Down 3 cm
Ankle - Same as before.
Foot - Same as before.

Today was light on massage and quick on the wraps. They did, however, add something new around my ankle. They called it a "gel pack" and it was supposed to better support the front part of my ankle/leg. It wasn't your typical gel pack and it looked really odd. I have no idea what was inside it and I can't even find a similar picture of it on the net. I'll take my own picture and find out after tomorrow's unwrapping.


*I hope I spelled that right...

Day 3 - Let the wrappings begin!

My measurements:
Thigh - 67 cm
Mid Calf - 53 cm
Ankle - 26.8 cm
Foot - 24.5 cm
Everything is the same except for my thigh.

Standard massage today: shoulders, neck, face, pits, sides, and lower legs.

My wounds have granulation tissue on them! Heal babies, heal! I need you to heal so I can go to the pool and lose 4 years of fat!












So they started wrapping my lower leg today. Boy, what a freakin' process. I have a protectivelegging covered up the lower half of my leg to prevent sore spots and rubbing.

-First they start with the toe wraps. Each toe gets wrapped around twice. Each. Individual. Toe.
-Then a bandage padding material is wrapped all the way up to my knee several times. Overlapping each layer.
-Then a stretchy legging is placed over the bandage padding materials.
-And finally open weave wraps, similar to these, are wound in a certain pattern all the way up my leg.

I can't wear normal shoes on that foot, it blows. I had to wrap my foot in a plastic Wal-Mart bag until I could get some surgical booties. So attractive.

Tomorrow's appointment is at 10:00 AM. I get to take the wrap off and shower before my appointment and they put it back on. On Monday my whole leg will be wrapped, all the way up to my hip. Hooray. :\

Day 2

My measurements:
Thigh - 69 cm
Mid Calf - 53 cm
Ankle - 26.8 cm
Foot - 24.5 cm
Down 1 cm in each place.

Today was good. I feel lighter and looser and I feel like I have more stamina. 2 solid hours of massage on my shoulders, neck, face, pits, sides, and they even started on my lower legs. After all the water movement from the massage, I gained the cm back in all places. That's good, though. That means the water is finally moving up and out! Go lymph nodes, go!

I have to wear support hose on my left leg. Luckily the thing is toeless and I can wear them with flip flops. I need to find some sort of lose slipper to fit over the hideous wraps I'm about to wear. Yaaaay.

So I need to lose weight, that's obvious. I was instructed to start out really light, working mostly on upper body strength. When my wounds finally heal, I can start going to the handicapped pool and walking around in the water. My two guardian angel nurses told me the weight would probably melt right off. After being in hibernation for a good 4 years, I'm really excited to get active again. Also: NO. MORE. SODA.

I need to keep my legs elevated over night. I'm going to either cover an old suitcase in blankets and pillows or wrap two couch cusions and a few pillows in some blankets. I'm going to snore like crazy, but atleast my legs will be up. :P

So yesterday I put the machine thing* on each leg for 1 hour each. I did the deep breathing before and after each leg. In bed I laid upside down with my feet against the wall while I watched TV. Similar routine tonight. Adding a little upper body work out. I plan on walking up and down our side walk for a solid 15 minutes, even though I think its going to kill me.

Another appointment tomorrow! 2:30. I think we're wrapping tomorrow, woooo.

*Teh machine!!!

First day of Lymphedema care!

I met with the two Lymphedema nurses at the Highland Oncology Center today. I'm always a little embarrassed when I have to bare my legs to new people, but they were both incredible women and made me feel completely at ease. I can't even describe how it feels to know that I will finally be taken care of.
First thing first, the redness around my old wound and my new wound is troublesome. They won't even begin to massage or wrap my lower leg until I've had a few doses of antibiotics for what looks like a new case of cellulitis.
Moving on to measurements. They measure mid thigh, mid calf, and ankle. I'll eventually get my measurements uploaded on here.
Finally to the massage. This massage is amazing. You can actually feel the fluid moving up through your body.
The major parts of your body that you want to massage are the: neck, armpits, sides, hips, and behind your knees. When massaging you want to use a scooping motion, always directing up towards your head. The reason being is your trying to make new channels and pathways up to the main lymphatic clusters.

The nurses stressed using a "deep breathing" technique along with the massage.
The technique:
You take both hands and firmly press down on your stomach with each inhale.
With each exhale, remove your hands. Kind of like how a jack-in-the-box springs out.

I have really high hopes for this treatment and I can't wait to see the results.

I survived - 4 Years Later

Let me just start out by explaining how I got Lymphedema.
4 years ago to this day I was in a car accident. My friend passed out at the wheel. No, we weren't drinking or doing drugs. I know that's what you are thinking! But we weren't, we really weren't.
I can still see her head hitting the steering wheel. I can still see my shin bone sticking out of my skin. I can still see my toes bent completely backwards.
Apparently we had clipped a trailer carrying DJ equipment, which in turn spun us around and caused us to hit an Escalade head on. That's right, a big fuckin' useless Escalade VS. our crappy little GrandAm. The motor from our car basically fell into my lap and crushed me. I broke my right hip, my pelvis, both legs in numerous places, and several toes.
The surgery fixing my right thigh/hip scarred and damaged my lymph nodes. The lymphedema started out as cellulitis and it was eventually treated with antibiotics. However, the fluid build up never went away and actually got worse.
Lymphedema made my traction* wound impossible to heal up. I've had the same wound for 4 years. I went through 2 years of wound care before my doctors/nurses even thought of lymphedema.