Before I post this particular post, I wanted to clear up some ideas that my blog is only for daughters of mothers/fathers with lymphedema, because it's not. I chose my blog and email address name, because I'm the daughter of someone with Lymphedema. Just like the store 'Lymphedivas', their products are for those with Lymphedema who are still Divas. I'm the daughter of a person with Lymphedema. :D
Anyways, with that part cleared up.. I was wondering if anyone else felt the way I am right now.
Tonight is a rather good night for my mom. She's not in too terrible of pain, which is a great thing, but it's like.. when she is in pain, and I know she is. I get angry. Not at her, even though sometimes... or most times, it seems that I'm angry at her.
I'm angry at myself, because I can't fix it. I can't stop her pain, and I can see it in her eyes that she's about to cry, and I don't know really how to handle it. I've never been good with handling tears. From children or due to a tragedy in the family or something, I can understand, but anything else, even for pain, I've had an issue with.
I've been able to handle my mom crying in pain, even though it makes me feel incredibly helpless. But other things, people crying because they just want attention or because of a sad movie or whatever, it makes me furious. No idea why, because I get teary eyed over movies sometimes. I sobbed like a baby with Benjamin Button and My Sister's Keeper. I was hysterical over those.
Anyways...
How am I supposed to deal with my mom's pain? I'd gladly take it or at least some of it, just to give her some kind of break, but I know I can't. I don't know how to release this feeling inside, without her feeling that I'm mad at her. I just get so angry because I get this helpless feeling, like I can't do anything for her, and no amount of MLD (Manual Lymph Drainage) massages I do will help her, no amount of time she's in the Reid Sleeves will help..
I know that's silly talk, because I've seen the difference that just two weeks.. -ten- days, have done thus far, but it's for the times she's at home and she's in pain, and she struggling to move.
I know that in time things will get better and she'll struggle less, but it breaks my heart to see her the way she is sometimes. I remember her as an independent woman, who did everything for herself, and rarely, if ever asked for help from anyone, to this person, who is dependent on everyone for everything.
I don't know.. I just want to know that I'm not alone in feeling the way I do. I want to know that I'm not a horrible person for feeling the way I do.
:(
xoxo
Not A Wanted Absence
I didn't want to leave you! I promise! Something went screwy with my computer, and I just finally got it fixed.
A lot of stuff has gone down the passed few days and it's .. yeah.. it's been a wild ride to say the least the passed few days.
My nephew, who my mom and dad raised, and is more like a brother to me than a nephew, wanted to help this week, so I let him go into the therapy room with my mom, so he can see how to better help her if I'm unable to do so. After he leaves there, he has this look and sense of accomplishment. My mom told me that she feels horrible, because she doesn't want her 15 year old grandson to have to rub her legs and such.
I guess, in a way, I can understand that, but for me, I see it as each touch is one touch towards her getting better.
She and I talked in the car on the hour drive to her doctors office, and she told me that she thought I was embarrassed to be seen with her. I love her so much, I never thought she ever thought something like that. I'm proud to be seen with her. I am proud OF her. She is forcing her body to move, despite the excruciating pain she's in almost every minute of her life. She is forcing herself to look passed the pain and to reach forward and to get the treatment she needs instead of sitting in her chair and crying.
In just these two short weeks, my mom has gone from needing to be literally shoved into the car, to being able to put one leg in on her own, which was an incredible accomplishment, and just this week, she was able to put both legs in herself, put on, and fasten her seat belt, adjust herself in the seat and everything without an ounce of help!
It's so amazing the things that people take for granted, such as being able to eat when they want, drink when they want, and simply move when and as they want.
My mom talked to Joey (Nephew/Brother) and I earlier as we were on our way back from therapy. I guess I never saw it the way she feels it.
She has to ask to eat. She has to ask for water. She has to ask for help to pick things up. She has to ask, sometimes, simply to move. All because with her legs and feet, she simply, physically cannot do these things for herself. She needs someone to get food and drink for her, someone to get things that fall on her. She cried in the car, and if I wasn't driving 75 miles an hour on the highway, I would have pulled over and hugged her.
It was the first time she had ever confessed how she felt. I never thought of it before. I never thought about what would happen if I was in her shoes. I get annoyed sometimes, because she'll call me, right when the climax of a suspense movie is about to happen, or just when I'm in the haze between being awake and being asleep.
I even yell at her.
I'm really not a horrible person, I just have little to no patience a lot of the time.
I don't like when her doctor calls me her 'caretaker', sometimes. It sounds like 'Undertaker' and my mom has far too much fight left in her to roll over and die. 'Caregiver' sounds as if I'm a babysitter or something.
Her therapist looks at me to be the responsible one, to make sure she's well taken care of. It's difficult for me.. not in the sense of not wanting to or not being able to take care of her, but rather, a few years ago... wow.. no.. It's now nearly a decade ago, that we got a call from my dad's brother's doctor. They told us that we should get to the hospital, because he wasn't going to survive the night. My dad drove all night to get there, with my mom, Joey, and myself in the car besides.
He made a miraculous recovery, and was able to go home. Shortly before he went into the hospital, my aunt, Shirley, his wife, had a double brain aneurysm, and she was in a hospice center. Anyways, they needed someone to take care of my uncle Rex, and without a thought, I told them that I would stay to take care of him. This was my first time ever being away from home, and it would be the longest time that I had ever spent away from my parents.
I stayed there for something like two or three weeks, and then I had to leave, so my aunt could come home. They wouldn't allow me to stay there to help them both, because my aunt needed intensive treatment that I just wasn't able to do...
Well.. I went home, and a week later, my uncle was gone.
I live with that guilt, despite the fact that there was nothing I could have done for him. My uncle needed a liver transplant, and because he was an alcoholic, they wouldn't even consider him for the transplant.
I was his 'Caregiver/taker' and I had failed him. I failed my father. My uncle Rex was his only brother, and despite the distance between them, they were best friends. My uncle Rex was the Cheech to my dad's Chong.
My Uncle Rex looked just like Cheech Marin, while my dad, when he was younger looked like Tommy Chong.
My dad doesn't blame me, no one does, except for me.
I'm afraid of being classified as my mom's caretaker.. because I'm afraid of failing her. I'm afraid of not doing something right.. I'm afraid of my mom dying.
That's probably my biggest fear, aside from losing my son. My mom is my best friend. I couldn't imagine life without her. And despite the fact that I know she won't be around forever, I don't want to be the one taking care of her, only to have her die.
I know that sounds incredibly silly.
So, I classify myself as a daughter. The Daughter to a woman who has Lymphedema. The daughter who loves her mother enough to help her when she needs it, and who tries to lessen my mother's pain.
I love you, Mommy.
Day Five...
Saturday, June 18, 2011
Saturday, June 18th, 2011
11:49am
I didn't write yesterday, because it was a hectic day. It started off with me waking up at 8:18am, and going to get my mom up for her therapist appointment. A bit later, I unwrapped my mom's leg from her compression wraps, and she got in the shower, while I got myself and my son ready.
Not exactly sure how, but we wound up getting off to a late start, so things were tense.
Unlike the passed few days, it was a rather bad day for mom. She was feeling really nauseous and her leg really hurt and it itched like crazy, and she had a little trouble getting into the car.
We got to the doctors, and hurried in. We got mom's Reid Sleeves gauged, and I was able to learn how to strap it up correctly so it doesn't hurt her.
We got home, things were fine for a bit, then I got angry about something stupid, so we had a family argument, and I went into my room with the baby so he could play. My mom called me back out of the room and I found out that my brother was arrested last night, so mom had a really hard time last night.
I let her have the night off from being wrapped up, but today, she's spending time with them on as much as possible.
We don't go back to the doctors until Monday. Monday is also the day that my son's dad is supposed to come home.. I'm really excited! <3<3
11:49am
I didn't write yesterday, because it was a hectic day. It started off with me waking up at 8:18am, and going to get my mom up for her therapist appointment. A bit later, I unwrapped my mom's leg from her compression wraps, and she got in the shower, while I got myself and my son ready.
Not exactly sure how, but we wound up getting off to a late start, so things were tense.
Unlike the passed few days, it was a rather bad day for mom. She was feeling really nauseous and her leg really hurt and it itched like crazy, and she had a little trouble getting into the car.
We got to the doctors, and hurried in. We got mom's Reid Sleeves gauged, and I was able to learn how to strap it up correctly so it doesn't hurt her.
We got home, things were fine for a bit, then I got angry about something stupid, so we had a family argument, and I went into my room with the baby so he could play. My mom called me back out of the room and I found out that my brother was arrested last night, so mom had a really hard time last night.
I let her have the night off from being wrapped up, but today, she's spending time with them on as much as possible.
We don't go back to the doctors until Monday. Monday is also the day that my son's dad is supposed to come home.. I'm really excited! <3<3
Day Four...
Thursday, June 16, 2011
Thursday, June 16th, 2011
11:00am
Today was the most incredible day! My mom was able to walk outside without the walker. She was able to get in the car alone, and she wasn't out of breath, or winded when she got settled.
We got to Huyen's office, and once we got inside, and she was up on the table, I was able to see the difference.
A bit of backstory... My mom's right leg was severely worse than her left leg, much larger, drier, harder, and heavier than the left.
Her right leg was significantly smaller than the left leg! It was soft, I was able to put my thumb between her toes, without pushing her toes out of the way. I'm so impressed! I nearly cried today, but I didn't want to look like an idiot, so I held them back.
I helped Huyen with the massage again today, I did the right while she did the left, and we got it all done. I keep saying it, but I was so amazed at the difference.
I am seriously wanting to go to school to be a physical therapist. There isn't enough that know what Lymphedema is, let alone how to work with it. I want to be able to educate, as well as help others with the quality of their lives.
My mom walked into Huyen's office, like she had been walking perfectly fine all along, and even did a little jig when she got there, before they hugged.
For those of you reading, I understand your nervousness and I understand that you're scared. My mom has type/stage three lymphedema. She will never have a super model's legs, but this is truly stunning.
If you have the opportunity, find a therapist, get the wraps done. Sure it's gonna be hard at first, but as we're noticing, things are getting easier little by little!
This wrap will improve the quality of your life. Think about it in the terms of my mom..
Before we met Huyen and Doctor C, my mom was taking very strong pain medication, and she couldn't sleep longer than two hours because the pain would wake her up.
On a good day, she fought to get her legs into bed, and by the time she got in bed, and comfortable, at least fifteen minutes had gone by, and she was so severely out of breath, she instantly needed to put her oxygen on.
On a normal day, she needed help to get into bed.
Now, she is able to get her legs into bed on her own. Sure there's still a struggle, but she doesn't need help to get into bed!
She hasn't had to take her Morphine nor the Vicodin. She still takes the Kylonopin, because it helps to steady her restless leg, and it keeps her a bit more calm to deal with the stress of being wrapped up.
Tomorrow, I believe I'll be helping with the wraps, and we'll be getting her Reed sleeves gauged so she can use them over the weekend.
I can't wait to see tomorrow's results!
11:00am
Today was the most incredible day! My mom was able to walk outside without the walker. She was able to get in the car alone, and she wasn't out of breath, or winded when she got settled.
We got to Huyen's office, and once we got inside, and she was up on the table, I was able to see the difference.
A bit of backstory... My mom's right leg was severely worse than her left leg, much larger, drier, harder, and heavier than the left.
Her right leg was significantly smaller than the left leg! It was soft, I was able to put my thumb between her toes, without pushing her toes out of the way. I'm so impressed! I nearly cried today, but I didn't want to look like an idiot, so I held them back.
I helped Huyen with the massage again today, I did the right while she did the left, and we got it all done. I keep saying it, but I was so amazed at the difference.
I am seriously wanting to go to school to be a physical therapist. There isn't enough that know what Lymphedema is, let alone how to work with it. I want to be able to educate, as well as help others with the quality of their lives.
My mom walked into Huyen's office, like she had been walking perfectly fine all along, and even did a little jig when she got there, before they hugged.
For those of you reading, I understand your nervousness and I understand that you're scared. My mom has type/stage three lymphedema. She will never have a super model's legs, but this is truly stunning.
If you have the opportunity, find a therapist, get the wraps done. Sure it's gonna be hard at first, but as we're noticing, things are getting easier little by little!
This wrap will improve the quality of your life. Think about it in the terms of my mom..
Before we met Huyen and Doctor C, my mom was taking very strong pain medication, and she couldn't sleep longer than two hours because the pain would wake her up.
On a good day, she fought to get her legs into bed, and by the time she got in bed, and comfortable, at least fifteen minutes had gone by, and she was so severely out of breath, she instantly needed to put her oxygen on.
On a normal day, she needed help to get into bed.
Now, she is able to get her legs into bed on her own. Sure there's still a struggle, but she doesn't need help to get into bed!
She hasn't had to take her Morphine nor the Vicodin. She still takes the Kylonopin, because it helps to steady her restless leg, and it keeps her a bit more calm to deal with the stress of being wrapped up.
Tomorrow, I believe I'll be helping with the wraps, and we'll be getting her Reed sleeves gauged so she can use them over the weekend.
I can't wait to see tomorrow's results!
Day Three....
Today was even better. She got into the car by herself again! When we got to the Doctors Office, we were nearly immediately greeted with Huyen. She informed me that today was going to be even more hands on. I learned how to do the massage!
It was hard to do, because I was afraid to hurt my mom and all, but wow.. once I got the hang of it, I let Joey try to do it while I held onto Gabriel. Joey got to help with lotioning mom's legs and all, and assisted with holding her leg up, while Huyen did the wrapping. She talked to him as if he was an adult, rather than what a lot of people do with younger people (Talk to them like their kids). I think Joey appreciated that too!
We left the office, and mom was able to get in the car on her own, with just a little bit of a push of her foot inside. The wraps make it difficult, especially with the silly velcro shoe she has to wear to keep the bandages from getting dirty.
We got home and everything, and dad brought chicken from Publix, we ate, went to bed, and mom didn't take her wraps off until 7:30am!
I am so beyond proud of her. Every day she goes longer! And these wraps are seriously no joke. There's at least six wraps, plus all the other stuff under the wraps, so I know it's gotta be difficult, but it's so worth it!
I hope tomorrow is even better!
It was hard to do, because I was afraid to hurt my mom and all, but wow.. once I got the hang of it, I let Joey try to do it while I held onto Gabriel. Joey got to help with lotioning mom's legs and all, and assisted with holding her leg up, while Huyen did the wrapping. She talked to him as if he was an adult, rather than what a lot of people do with younger people (Talk to them like their kids). I think Joey appreciated that too!
We left the office, and mom was able to get in the car on her own, with just a little bit of a push of her foot inside. The wraps make it difficult, especially with the silly velcro shoe she has to wear to keep the bandages from getting dirty.
We got home and everything, and dad brought chicken from Publix, we ate, went to bed, and mom didn't take her wraps off until 7:30am!
I am so beyond proud of her. Every day she goes longer! And these wraps are seriously no joke. There's at least six wraps, plus all the other stuff under the wraps, so I know it's gotta be difficult, but it's so worth it!
I hope tomorrow is even better!
Day Two...
It's sooo not easy getting up at like 7am, and I'm not a big fan of morning traffic, however it's for my mom, so I do what I do for her!
Today, Mom, Joey, Gabriel and I, trekked back to see Huyen. She always seems so happy to see us! My mom told her how she struggled with the wrap, and every time she was going to take the wrap off, she saw Huyen's eyes, and the hope she had in them for her, and it gave her the courage to keep going.
There was a significant change in mom's leg already. Today, she got into the car by herself, not an ounce of struggle. When we got there, there was another lady there to do this demo thing for, Life Touch, I think it's called. It's this wrap thing, that goes around my mom's belly, and since Huyen was wrapping her right leg, the demo was only done on the left. I think they said it was a drainage system, to help the lymph fluids to move around easier. When I remember the exact terms, I'll let ya'll know!
Huyen did the massage, and such on mom's right leg, wrapped her, and with holding onto her walker, mom was able to stand while Huyen wrapped her leg, which is a great change for mom, who is usually only able to stand for a minute or two at a time before she's in pain.
Things were a lot easier to get her in the car, and I had her eat some popcorn and drink a soda in the car, since her sugar was low. I think it's because of her nerves with being wrapped that her diabetes decided it wanted some attention as well as the Lymphedema.
Bah.. I just realized I've been spelling it wrong.
Anyways, we got home, and I made dinner. We ate, went to bed, and mom was able to keep her wraps on until 4am! I'm so proud of her!
Hoping tomorrow is as great a change as today!
Today, Mom, Joey, Gabriel and I, trekked back to see Huyen. She always seems so happy to see us! My mom told her how she struggled with the wrap, and every time she was going to take the wrap off, she saw Huyen's eyes, and the hope she had in them for her, and it gave her the courage to keep going.
There was a significant change in mom's leg already. Today, she got into the car by herself, not an ounce of struggle. When we got there, there was another lady there to do this demo thing for, Life Touch, I think it's called. It's this wrap thing, that goes around my mom's belly, and since Huyen was wrapping her right leg, the demo was only done on the left. I think they said it was a drainage system, to help the lymph fluids to move around easier. When I remember the exact terms, I'll let ya'll know!
Huyen did the massage, and such on mom's right leg, wrapped her, and with holding onto her walker, mom was able to stand while Huyen wrapped her leg, which is a great change for mom, who is usually only able to stand for a minute or two at a time before she's in pain.
Things were a lot easier to get her in the car, and I had her eat some popcorn and drink a soda in the car, since her sugar was low. I think it's because of her nerves with being wrapped that her diabetes decided it wanted some attention as well as the Lymphedema.
Bah.. I just realized I've been spelling it wrong.
Anyways, we got home, and I made dinner. We ate, went to bed, and mom was able to keep her wraps on until 4am! I'm so proud of her!
Hoping tomorrow is as great a change as today!
Day One...
Monday, June 13th, 2011
11:00am
Today was our second appointment with Huyen Lu Vitale. This woman is a complete Godsend. She listens, she explains, she answers questions, and makes sure my mom and I both understand what she's doing before she moves on to the next thing, even if it takes more time, she takes her time to make sure we know what she's doing.
I was able to watch, for the first time, my mother getting her massage done. Huyen applied lotion, making sure that she wasn't hurting my mom, and then she cut and fashioned the garments. First the mesh stocking, then this gauzy stuff that is supposed to protect her leg from feeling the foam. Her toes were wrapped, and then this thick foam was placed on.
I was able to get up close and personal, by holding my moms leg as Huyen wrapped her leg. I don't think I'll ever think of or use the word 'Has' again without thinking about her. LOL
The first wrap on her foot, is wrapped much like a Roman sandal, and then the second wrap is 'H-A-S' -- Heel, Ankle, Sole. First, anchoring, then around the heel, then the ankle, then the sole, and repeated, though she didn't end at the foot area, she brought it up a bit, so it didn't unravel or hurt my moms foot when she walked; all of this was around a piece of foam that covered her foot, almost to the toes.
Then there was the longer wrapping, which was a spiral, and she also did a Herringbone wrap as well, though she said that wasn't too important, and I wouldn't have to do that part, just the spiral. This was around a longer piece of foam that covered from the ankle to the knee.
Finally there was the thigh piece, and more wrapping. It all looked very uncomfortable for my mom, but as much as I don't like her to be uncomfortable, I know it's for the best.
Today was big time difficult, especially when we got home as well. It was sweltering hot, and my mom was rather annoyed. She felt as though she couldn't catch her breath, and instead of sleeping in her bed, she caught a few Zzz's in her computer chair.
Despite her being a bit testy today, I'm very proud of her. She lasted from around 12:30pm until 2am with the wrap, before she lost the battle with the wrap, and had to take it off.
Tomorrow, we go back again. I hope it's easier for her.
11:00am
Today was our second appointment with Huyen Lu Vitale. This woman is a complete Godsend. She listens, she explains, she answers questions, and makes sure my mom and I both understand what she's doing before she moves on to the next thing, even if it takes more time, she takes her time to make sure we know what she's doing.
I was able to watch, for the first time, my mother getting her massage done. Huyen applied lotion, making sure that she wasn't hurting my mom, and then she cut and fashioned the garments. First the mesh stocking, then this gauzy stuff that is supposed to protect her leg from feeling the foam. Her toes were wrapped, and then this thick foam was placed on.
I was able to get up close and personal, by holding my moms leg as Huyen wrapped her leg. I don't think I'll ever think of or use the word 'Has' again without thinking about her. LOL
The first wrap on her foot, is wrapped much like a Roman sandal, and then the second wrap is 'H-A-S' -- Heel, Ankle, Sole. First, anchoring, then around the heel, then the ankle, then the sole, and repeated, though she didn't end at the foot area, she brought it up a bit, so it didn't unravel or hurt my moms foot when she walked; all of this was around a piece of foam that covered her foot, almost to the toes.
Then there was the longer wrapping, which was a spiral, and she also did a Herringbone wrap as well, though she said that wasn't too important, and I wouldn't have to do that part, just the spiral. This was around a longer piece of foam that covered from the ankle to the knee.
Finally there was the thigh piece, and more wrapping. It all looked very uncomfortable for my mom, but as much as I don't like her to be uncomfortable, I know it's for the best.
Today was big time difficult, especially when we got home as well. It was sweltering hot, and my mom was rather annoyed. She felt as though she couldn't catch her breath, and instead of sleeping in her bed, she caught a few Zzz's in her computer chair.
Despite her being a bit testy today, I'm very proud of her. She lasted from around 12:30pm until 2am with the wrap, before she lost the battle with the wrap, and had to take it off.
Tomorrow, we go back again. I hope it's easier for her.
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