Posts tagged #lymphedema

Micheal Phleps looks like ME

cup·ping

ˈkəpiNG/

noun

noun: cupping

  1. (in Chinese medicine) a therapy in which heated glass cups are applied to the skin along the meridians of the body, creating suction as a way of stimulating the flow of energy.

It is not a new therapy actually it is over 3,000 years old but Michael PHELPS - Olympic | United States of America does it and people go crazy! Fact I have been doing cupping for about 4 years now. When I was doing it years ago a woman handed me a card for spousal abuse telling me I was not alone and there was help for me. I was yelling to her “No No it is a treatment”. I do not think she understood what I meant though.


I went to a massage therapist years ago who tried to work my back for the aches of surgery and my arm from Lymphedema  and Axillary Web Syndrome (Cording) . Patrick Fuller took one look and calming told me I was a mess, which I already knew. He suggested cupping, I had seen many friends getting this so I figured -why not, it won’t hurt (or will it). My back as destroyed from surgeries and having my breast removed, one arm has cording the other lymphedema so I just wanted relief. Yes, I wear my sleeve but this is life long and needs maintaining.  The cupping I do is when they light the glass jars and stick them on, he leaves them there for about 15 minutes. I sleep while they are on. They can apply them and pump them on although I do not like that style as much, I think most athletes do this type. 

Photo credit www.themollyproject.org

Photo credit www.themollyproject.org

 

Cupping gets the blood flowing and lymph system moving which can only help in lymphedma right? When you have cording the pain from the twisted “cord” is so intense you want relief but relief is popping that cord OUCH. What cupping does is loosen the webbing so the massage therapist can work it out with ease. From medication and surgeries your body harbors so much toxins, cupping releases them from your body. Now add MS to my mixed bag. Cupping decreases my pain, helps with digestive issues, increase blood flow and circulation (ummmm so important), and detoxification. It WORKS! After a session I want to schedule another so I can still feel pretty good. The trick is keeping up with it. This for me is like taking my medication I have to stay on top of it.

 

My family was not a believer so my 16 year old son needed his back worked from running he had a horrible knot. Patrick was working on him when he felt it, he told Ben he could scrap the knot out which was going to be painful and take a long time to release or he could get cupped. Ben choose cupping and he loved it. The pressure is relaxing and soothing. There is no pain involved and when he was done Ben felt amazing, He made a comment that he felt like he was standing taller and he was! See the cupping broke the knot up and relaxed his muscles so when he stood he was not hunching in pain. Ben was sold!

 

Now I know everyone is reading about the swimmers and gymnasts and other athletes doing this so they want to try it. You should for sure but my advice is to make sure the person you choose is certified and experienced. This is not for an a newbie to try. ASK YOUR DOCTOR! Please make sure you clear it with them. You will love it but make sure you are doing it right.

I do thank the athletes for drawing attention however if one more person asks me if I am doing “that Michael Phelps” thing I may scream! Next they will all start wearing tiaras…...

FYI the big spot under my tattoo is when my cording starts. When I left I could place my arm down without any pain!   

FYI the big spot under my tattoo is when my cording starts. When I left I could place my arm down without any pain!

 

Divas at your service-Happy One Year Anniversary to me

It has been one year since I joined the CureDiva team or better yet family. When I was first asked by Efrat to blog she wanted me to dig deep for my first post about body image. Efrat wanted the Diva Community to see just what my blogs were about. Efrat wanted the lounge section be a place where woman could find the help, tips and resources they could feel trusted, just like girlfriends relying on each other. I have felt like in this past year I have helped build this community just like my girlfriend wanted. Here is the thing, there is so much to CureDiva people have no idea about. I have seen posts and and questions about the site being just a shop and  selling "stuff". While yes it is a shopping mall it is so much more and in the past year I have learned just that. I have decided to share some stories just so everyone can see what CD is about. 

Cure Diva offers two services that no site seems to have. One is the Guardian Divas.  An area that I run and am honored to be a part of. Woman who are looking for support can now reach out to these guardians who have been there. Seems like a win win because for the guardians it ends up being the therapy they need to heal. You know it is never over and this helps us push through. The other is "Divas at your Service".  In the bottom right corner a screen pops up asking for help, seems simple enough. Except what is on the other end is not a computer or mass of people randomly answering questions they know nothing about. It is myself, Lisa or Carole woman who get it, who understand and want to help you through your cancer process. May not seem huge but when you are DX with breast cancer which is so private this intimate chat is so such a relief. I want to explain just how.

The Alone

I was on the service and chatting nicely with a woman who was very alone. She lived in a very secluded wooded area and none of her friend ever had breast cancer. Her support was great but no one really understood. After her mastectomy she had chemo, rads, a horrible infection, implants removed and scars so bad she can not use any prosthesis, NONE. She hated this, she missed her breasts, any breasts, she just wanted to be a girl again. She hated, loathed how she looked without a bra, is there anything she could do. I gave her my number and she called me. I showed her various bras and we decided on the Ana Ono kelly Lace . The fact that this bra was made by a breast cancer momma made her so happy! Great she said and we hung up. About a week later I got a call apologizing for bother me. "Alone" wanted to tell me that the bra was just what she needed. It made her feel like a woman, she felt pretty again like herself. She was always pretty I am sure but the bra gave her that boost! She thanked me about 100xs for giving her a piece of herself back and then I heard it-the tears and crying. We sat there in silence both crying for what felt like a minute but was probably 10 seconds. That moment it was about sisterhood, that is CureDiva.

The Grandma

I got an email from Carole asking me to help this sweet old woman, no problem. She was 87 and a 21 year breast cancer survivor!!! Hated that young kids were getting breast cancer said it was for old ladies and a stupid disease. I loved her right away. She didn't leave the house much but had a single mastectomy, used a walker and needed a new prosthesis her old one was "shot to hell in a hand basket". After an hour and 45 minute chat were I tried to figure out which one she had and find a bra we placed an order. I called her back when I knew she got it. She was so happy that I not only called her but remembered and even happier that it works like a dream. Now she will look all together at church, "you made this old lady happy". that is CureDiva.

The Uni  

Our PR told us about a TV show doing a make over for a breast cancer patient and could we send some products. Great, that sounds just perfect. After getting some info I asked if I could please talk to the star because we needed to know some info that would help with the bra and the prosthesis. After some persuading they said yes. So I rang the woman, "Is this AnnMarie of SDBC" was her response. Not only did I know her but I LOVE LOVE LOVE her. She is a young BC girl who needed this make over and a prosthesis.   See she had been knitting herself one, yes you read that right. After we both burst into chills and tears I go her measurements. For her it wasn't about getting just a bra it was about getting back into her life. She needed to start getting out of the T shirt and jeans and start having a little style like she did before all this shit!  I loved picking out her bras ( I found ones with pretty colors that would look great on her) and inserts, knowing who was getting them made me so happy. That is CureDiva

 

The Brobe

I was helping this lovely woman with her mastectomy prep. Her doctor never gave her the info about using a recliner to sleep in so I told her about the BedLounger. She was so excited to have these tips. We chatted about treatment what she was feeling and what was next. She wanted all the options possible for dealing with drains and really wished we had the Brobe which was on back order. I do this 'Sisterhood of the Traveling Brobe" and sent her mine. She was blown away by this plus I sent her a Bravery Bag. We have been texting ever since. She sent the Brobe back and I have since sent it on to the next but that is what CureDiva is about making that connection.

CureDiva is not just a shopping page it is a community set up to give the best possible platform for connecting to others. I have made so many incredible connections through this page. I did not even blog about the vendors!!! Nor have I discussed my Tali, my sun who I love with my heart even a sea can not break our sisterhood. I work with a small company that I am in contact with daily. They listen to the voice I have for the breast cancer community and respect those crazy comments I have. Aya, Dana, Maor, Zohar, Carole, Lisa, Mor, Ayete  all work together with the same mission to make CureDiva a community not just a page. Now if only I can talk them into a tiara section it is the only page we are missing! 

Happy one Year Anniversary to me! 

 

Thank you for being a friend

Fact- I have made the bestest, most awesomest friends since my diagnosis. I mean they are the best. Some have become like sisters to me. One I even traveled to go see this weekend. It was epic to hug her (not to tight the girl is  mess) but the reality was a quick trip to the doc to have her checked for some serious pain. Fucking metastatic cancer. I loved every part part of being with Seporah this weekend. The food, her town, her hamster and fish, the laughing but hated with a passion the cancer part. NO it wasn't all about cancer but her pain was clear and how it effected the visit was yet it didn't matter if we just sat and did nothing either proving what amazing friends we are. I hated leaving her, hated it like a child hates to part with it's blankie. We needed this weekend like oxygen and I would not trade it for anything but watching her color change from walking too much or having to pick up her friggin nasty tissue cause she was in pain told me a different side to this. The reality of our friendship. The sisterhood is real, I mean I traveled 4.5 hours to see the freak not knowing what I was getting into. Granted I brought Tom but what good is he really the big sap! I would be lost with my skittle butt and devastated if she wasn't part of my daily routine. 

 I will not say that I met her or any of my peeps because of cancer I refuse to give cancer the benefit of giving me anything especially these fabulous men and women. I do call them my "cancer friends". They get it, they understand all the effed up shit that comes with cancer. And I mean all of it. There is so much emotional baggage that sometimes I think  it out weighs the physical. So the truth be told we need each other like oxygen. Studies show that 70% of those who find a support group do better in their healing, hence the reason I have created Bravery Bags, Warrior Wellness  why I work for pages like Cure Diva and the Googe Chat.

BUT here is the thing. As much as I love Seporah, Lisa, Bob, Kate, Nancy, Tali, Efrat, Norma, Val, Mabel, Remi, Knot, AnneMarie, Val, Jo, Emily and so many others. Some of them I talk to daily and all day. I need them like my family. BUT if someone came along and said "if you could get rid of cancer but all those friendships would go would you?". WOW, ummmmmm yes I would. Cancer ruined their life, altered and destroyed them. It has killed my friends Barbie, Jen, Shelly, Kim, Jennifer and so many more. So yes as much as I love these amazing people in a heart beat I would lose that and that breaks my heart at the same time. If only this was that simple it is not, cancer is here but the thought entered my mind so I had to put the thoughts down. And after this weekend it would be even clearer. I am honored to know Seporah but for her to never have cancer would be an honor beyond existence. One that even me typing this is making me cry because I know that it is a dream, warped right?

Our relationships are s vital to us living through cancer. Our diagnosis are all different, our take on cancer may not be the same, even our time zone are not lined up but we connect. We connect in a way that makes us push our crazy butts through this cancer world. We love each other and understand the screwed up, surgery, chemo, radiation, tamoxifen, scared ways that cancer leaves us. We get that some days we don't want to be positive happy go lucky freaks that we just want to cry. We know that sometimes we just want to laugh at our loop-sided nippleless breasts that are sewn together with our butt (yes sometimes we have butt-boobs). We want to dream we never met and never got cancer. And some days we drive 4.5 hours so give each other a hug in real life because we love each other so. 

I am just glad I don't have to give them up. I am also glad that none of these cancer friends will take my tiara or boa or stilettos, well Bob might but that's a different blog! 


we don't get over we get through

I hate when people say "you will get over this", that is a load of crap no matter if it is cancer or death or heart break. If it is real, caused you pain and you suffered then getting over it is something will never happen. I for one never got over my mother's death or any of my friend's passing what I did was I got through it. My girlfriend's son died tragically last year and that was the first thing I said to her "you will get through this" never over. How can you get over something that changed your life 180 degrees?

 

The reality is cancer never for a second lets us get over it. For those of you just starting out don't freak I swear it gets better but the fact is it is always somewhere lurking to remind you. Sometimes it comes up with maybe a sharp pain in your chest, doc calls it phantom pains I call him a LIAR that is real pain right there. Or it maybe a friendly reminder with that doctor appointment that you have to go to every 6 months, add the scans and blood work every other 6 months with a little scananiexty and BAM right back in. How can you get over something you are in? Is it ever out  of your head I mean really out of your head? No but you have to find a way to push through it to get to that new place of normal.

Getting over something means you do not have to deal with it but every time you get dressed there you are naked truth of what happened months, years, weeks or whatever before. For me with my wonderful keloid raised scars, lymphedema, and cording I am dealing daily with the physical reminders of what I cancer is telling me to "get over". It is my job to push pass these stupid dumb obstacles. And it is not easy these reminders of how cancer changed our lives, what we can not do any more. How it altered our body and distorted our views of our self. But we must push through and adjust our mind, body and even our spirit to this new life.

I know that my family and friends are sick of the complaints of pain and don't really get the scan nervousness for that I turn to my cancer friends. I swear I would be lost without an email from Seporah, a text from Lisa or Jaime, a tweet or an IG post from all my pink sisters and do not get me started with Facebook messages. We lost two sisters this week and their death hit us all hard. I sat here and cried for two women I only "met" through the cyber world but I loved, connected with and considered family. My cancer family was crushed. They get it. How do we "get over" that? Can we just get on after losing such amazing friends? No way but we must push through to a new day. Together we must send love, light and raise the middle finger to cancer because I do not have a cure! They are there for the push and sometimes I do mean they are trying to push me right off the road into the fast lane. They know when to give a shove or pull back they can tell cause they have been there. They are getting through themselves not getting over anything.

So saying "get over it" is dumb. You get over a fence or a stream but cancer oh hell no. When you have deep scars, death of friends, side effects, insomnia, weight gain, muscle loss, physical pain, hair loss, hair growth in friggin bad places, toe nails falling off, mishappen boobs, numbness....how can you get over? Then there are those fabulous moments when you have a "cancer free" day, hour, 3 hours. You go about your business and then you realize that you are free of this crap, but then your arm swells cause you pulled a hang nail and your lymphedema activated. SHIT!  But you straighten your tiara, slide your pretty bedazzled sleeve up, smile, put a dab of gloss on and say

"Don't tell me what to do! I am getting through this my way"