Cindy’s update on the funding issues for those with Lymphoedema

imageAlways great to hear from Cindy and how she is progressing, she is also great at responding to people’s questions and staying in touch with everyone. This is a link to one of Cindy’s previous post https://lymphnodetransplant.wordpress.com/2015/08/06/cindy-8-months-post-surgery-with-dr-granzow/

In her latest update she despairs of the  system that does not allow her to claim for the stockings she needs. Insurance for the treatment, care, support and garments seems to be lacking world-wide for Lymphedema. How has it been for all of you with cover for your lymphedema? In Australia without private cover there is little help from Medicare. Even with private cover there is a gap in cost and what the patient pays.

Cindy says …. “I am happy to report my leg has remained small, feels soft, has more flexibility and looks good. Though, I still wear compression during the day. I must remind myself that my surgery didn’t cure my lymphedema, it improved the appearance and overall health of my leg. I have a Christmas party to attend and will go without compression for a few hours. I will post an update after the party. Even if my leg swells a little, I am confident elevation with bring it back down. Nonetheless, it is a little daunting to think about not wearing compression!

I am replacing my garments every 3 months and am paying out-of-pocket. I have insurance that will cover them, but am unable to find a local medical supply company to order them. It was just brought to my attention, that the company I deal with has an exclusive agreement with a manufacturer, they will only sell their products. So, I am on my own when it comes to buying my Elvarex. I cannot put into words how angry I am over this. I find a garment that works for me and even though my insurance will cover it, there is no 3rd party to order it for me. Guess there is politics involved when it comes to lymphedema too. Everything about this wrong! There are few local services available for treatment of lymphedema, the ones that are here either don’t take certain insurances or choose to work exclusively with one company. I do not understand why everyone cannot work together when it comes to treating and managing lymphedema. Bless all of those involved in surgical, pharmaceutical and stem cell research and/or treatments for lymphedema. Bless all those PTs, OTs and others that help us manage our lymphedema. Shame on all of you out there (insurance companies, DME supply companies, some doctors, etc) who block our access to the treatment we need.

I will update after my evening out with no compression! :)”

Thanks Cindy for your update, if anyone has questions for Cindy please add them as a comment…

In America the Lymphedema treatment Act  is fighting for better cover for lymphedema .. http://lymphedematreatmentact.org

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In Australia we have Lymphoedema action Alliance.
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In England the Lymphoedema Support Network 

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Please add in the comments any other groups who are fighting for recognition for those with Lymphoedema. We deserve better coverage from our government health funds. This coverage should be for those who have Secondary and Primary Lymphoedema world-wide.. We need far better funding than we have at this time …

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20 thoughts on “Cindy’s update on the funding issues for those with Lymphoedema

  1. Unfortunately for many who suffer the effects of cancer and its subsequent treatment the hardship hits the pocket book and our lifestyle in devastating ways. I didn’t have any extended health plan at all so not working really was not an option.. Yes, my surgery was covered and the treatment itself but not the fallout from this.
    I know that I was more fortunate in the type of cancer that I had (uterine) still when I found myself throwing up in my waste basket at work from the effects of radiation…I’d had enough.
    And I’ve questioned the system from day one much to their chagrin.
    Suffering from an illness or just being sick with the flu is one of the biggest industries worldwide. It is a huge money maker for the big pharmaceuticals.
    I feel sad for all of those who continue to be fleeced by a system that seems to be globally inclined to take advantage of those who are most vulnerable.
    I’ll continue to pray for good health for all of you.

  2. I am happy for Cindy’s progress.

    However, my views are not mainstream at all, about this subject.

    First off, I do believe that it WAS our choice to have lymphedema – or basically most of any physical conditions. It is the soul and the mind that control the body, and not the way around. There ARE mental, emotional causes of almost all illnesses, lymphedema not being an exception. But this is not something that many people struggling with it can even imagine. Yet, until we don’t go to the ROOT of the problem, we can never heal ourselves.

    Therefore, it is very WRONG to make OTHERS wrong about our condition.

    The condition of your own body is only YOUR own responsibility and of nobody else!!! That is the very, very first thing one must realize. This might sound harsh – but in the same time, it has a huge advantage: at the moment you realize and accept that YOU are the boss and you don’t need to depend on the doctors, your insurance and so on, you can start turning things around for the better! (But ONLY then you can!)

    As for me, the last thing I would want to spend any of my energies on is to fight for being recognized as someone suffering with lymphedema. Why should I? It’s much better to use my efforts to heal myself than being an activist for some kind of organization – where I am not even very sure where does the money go…

    Being angry and fight with a system has not healed anybody yet and never will.

    I don’t have any health insurance at all, I need to pay for all the doctor visits, labor tests, garments (that are changing all the time in size) and everything else from my pocket. Today, there are sooo many ways to make extra money – but it doesn’t include whining about or fighting against the healthcare system.

    • I was not going to approve this comment to start off with but I guess everyone can have an opinion and others can make their judgement of what you are saying … I find what you are saying quite offensive and maybe you should keep these opinions for your own blog …. Thanks

      • I am normally totally not into mainstream 😀 but after reading Andrea’s comment i might reconsider the word mainstream ☺️.
        If everything is on ourself to blame, why do anything? Why try yo help people, eh? This is a very self-centered way of thinking and luckely not maisnstream!
        I don’t even understand: you don’t want people to comment on health care systems but you do take the time yourself to comment on people who are ill and trying to help each other.
        Like you said Loretta, there is something called genetics, like my mother and grandmother have le too. I guess in Andrea’s view they wanted to give that to me 😳. It sounds like a joke to me, to be honest it almost made me laugh.
        Your story Loretta did not. Huge respect to you and your family. Honestly. Take care to you and your family and lots of respect to all you strong people out there fighting struggles with grace and respect.
        X

    • Andrea,
      I do agree your views are not mainstream. What my post didn’t include was that I was told I had stage 1 uterine cancer. After having a radical hysterectomy there was no cancer found. Based on your statements, I’m guessing I gave myself cancer and then used my energy to will it away before surgery???? My post also didn’t include that my internal stitches
      opened and my small intestine prolapsed outside my body. That required emergency surgery. Was that my doing too?
      Everyone is entitled to their opinions. After reading your post, I can safely assume your mind works the way it does due to mental and emotional issues you have brought upon yourself. Andrea, you don’t sound harsh, you sound very ill (and whiny) and I hope you use all your energy to heal your very sick mind. This of course is just my opinion and I don’t mean to be harsh. Just speaking my version of TRUTH.

    • Andrea I read and reread your post numerous times and just couldn’t believe what you wrote. You are entitled to your opinion and maybe that is how you cope with your life and the issues you have. But like Cindy I didn’t choose to have Ovarian cancer, one of sisters didn’t choose to have cervical and uterine cancer, my other sister didn’t choose to have colon cancer and my father certainly didn’t choose to have colon and kidney cancer.
      There is a thing called genetics that all the meditating and wishing and praying was not going to change. I wish it was as simple as you state, I can change my diagnosis with changing my mind set. I must hate myself very much to have my husband die at the age of 30, and being diagnosed with ovarian cancer, and really want to torture myself with lymphedema.
      Yes you are entitled to your view but let’s be realistic no one absolutely no one would allow these things to happen to themselves.
      Good for you you can manage without having health care, maybe you are wealthy but the majority of people need the assistance of health insurance . I applaud Cindy for fighting for us all so that lymphedema garments are covered by insurance. Maybe you are one of the lucky ones that can wear ready to wear garments or maybe you just meditate your lymphedema away, but I need custom garments that are extremely expense.
      I am not whining just stating what others with lymphedema are thinking, if you don’t have anything positive to add to those of us who are seeking support stay off the site . As you say you don’t want to be defined by being a person with lymphedema then you shouldn’t be on the site.

      • Very well said Loretta… At first I was not going to allow this comment from Andrea to be shown but then I decided I would so people could give their views and show Andrea that what she says is distressing .. Oh that life was so simple that we could just think our problems away..i am so tired of people who make us feel our health is our fault and if we ate this or did that we would not have cancer…. I am so sorry to hear your family history, genetics play a huge part in familiar cancer… Take care Helen xx

      • Well said Loretta. This site is to help support each other. It gives us the ability to share our stories without the fear of being judged. I’m not a victim, I am a survivor and proud of it. I will continue to advocate for the treatment of lymphedema. I will continue to make myself available to anyone that has questions or just needs someone to talk to. I do believe in being proactive in our own health and healthcare. I do believe in helping others.

          • Helen,
            It is my pleasure to be a part of the wonderful community you have created. Your blog has given me comfort, support and guidance when I needed it most. Before finding your blog, I was overwhelmed and felt very alone in navigating the world of lymphedema. My hope, my desire, is to give back to those out there dealing with lymphedema. Your blog, has allowed me to connect with others and form meaningful relationships. The comment from Andrea is unfortunate. It was a hurtful response and one I needed to address because I felt attacked by her words. I’m all for different schools of thought, her delivery was crude.
            Thank you for your kind words.

  3. I do believe that state of mind helps with dealing and coping with everything that comes ones way. But to think that your mind can change or prevent a disease is quite frankly, well, crazy. Steve Jobs would probably still be alive if he had appropriate medical care even though he truly believed he could keep his cancer from spreading simply by hoping and using homeopathic medicines. I think that because Andrea does not have insurance and is therefore forced to hope that mind over matter will help her control any all illnesses. I am not a big advocate of the medical profession because it is more reactive care instead of proactive care. Lymphedema in this country is an example. No one suggested to me to go into pre-lymphedema care to alert me to the possibility of coming down with this disease. Instead I actually had to come down with it and then received care….how ridiculous. Maybe if I had been in a preventative type of care I may not have had the problem. We will never know. Once I was diagnosed with lymphedema all I did was complain to my Physical Therapist that if medicine can replace a heart, kidneys, etc why is there not replacement for lymph nodes….because all I did was complain she finally gave me the name of a doctor in my area who did the surgery….gosh why was not that given to me on day one of physical therapy. I do not know but am very glad that I was squeaky enough to finally get some information. Thankfully I had the surgery and my response has been very good. I am not sure as if my doctor is as proactive post surgery as Cindy’s doctor….but I just do what Cindy does based on her doctor’s recommendation. I do at home massage therapy as I was with a physical therapist for so long and was given instructions on at home care that I did not feel that I needed to go back to a physical therapist for that. However, it was Cindy and not my doctor who told me she was doing the massage therapy and that maybe I should do that also. As far as compression, I was in and continue to be in a custom garment. I no longer wear it at night and my plan is to start cutting it out bit by bit the summer of 2016…about 1 year post surgery. My doctor did measure my leg at my last appt and my calf and ankle are smaller than my non problem leg. My thigh is still a bit bigger but not much. Most importantly there are many a days a week I no longer “feel” my leg. I would recommend this surgery to anyone who qualifies. I told my husband that I did not care if the insurance paid for it or not…if I qualified I was getting it done one way or another….I had a Plan B to negotiate like hell with my doctor knowing that they only get about 10-15% of what they bill the insurance companies anyway….luckily my insurance covered most of it….I had my copays of course, and my insurance does cover my compression garments of course I have to pay deductibles and copays.
    Good luck Andrea with your mind over matter healing process hope it works out better for you than it did for Steve Jobs.

    • Glad to hear your surgery is producing good results… Yes we do have to be a squeaky wheel to get the attention we need that is for sure … Thoughts alone will not fix things!!! Keep us posted as to your progress.. Helen

    • Joni,
      I totally agree with your reactive and proactive statement. Had someone told me lymphedema was a possiblity, I would have immediately reached out to lymphedema therapist. I would have happily wore a light weight compression garment and received MLD as preventive measures. So glad your leg is doing well. My lymphedema leg is smaller in some areas than the non-affected limb. Please keep us all up to date using Helen’s blog. I know we communicate outside of this community, but I’m sure others would love to hear about your progress. Lots of information out there about arm lymphedema, those of us with lower limb lymphedema need to keep the information circulating.
      Are you wearing compression? If so, what kind and how often? Wishing you a fabulous 2016. Honestly, I’m wishing all of us a fabulous 2016!!!! I’m so happy I had my surgery.

    • Joni,
      Just read your post again. You are doing exactly the same thing I am. Compression during the day, nothing at night. I’m approaching the year anniversary of my surgery, my goal is to pull back on wearing compression, try a lower weight compression, etcetera. Wanted to give my leg a full year to heal. Though, I’ve been told maximum results can take up to 18-24 months. I’ll just take it one day at a time, that’s all I can do. 😊👍

  4. My apologies everybody if I sounded offensive, that was not my intention. And thank you Helen for approving my comment.

    And sorry Loretta for your husband!

    You girls can all judge me in any ways you want to. But just a little correction so that you can see some facts and can see whom are you judging:
    I am not wealthy at all, in fact I am restarting my life from scratch these months. It means that to be able to pay for everything I need, custom made garments for TWO legs (I have to buy new ones almost every month, because my legs are changing so quickly) and so on, I go out in the street and sing to make ends meet. Yes it is winter here and I stand there with my bad legs in street corners late at night and sing. The other night a bum with his dog attacked me and he took the money I have made that evening. But life goes on, next night I had to go out again. And I am going now again, 10pm.

    Now go ahead and judge me. You judge me and call me whiny, who are waiting for somebody else to pay for your needs and if they don’t, you keep fighting them. Well.

    And thank you: my mind over matter processes do seem to be working pretty alright, 8 years after cancer I am still healthy. Now it’s only my legs, and I am getting thank you’s for the methods that I am applying to heal them, because they work for others, too. Not only “think it away” things but physical processes as well.

    In my comment, I didn’t with one single word, write about that one should find fault or feel guilty for coming down with one disease or the other. TAKING RESPONSIBILITY for your own health means something else – I don’t want to type it here again.

    So now you are calling me a “sick mind”, misinterpreting my words. Fine. It’s not my problem.

    It’s quite disheartening to see that despite of so much information available on holistic medicine (and some of them being successfully applied for thousands of years), the vast majority of people who are involved with lymphedema in one way or the other, deny it and don’t even look at how it could help them. But keep looking at others for solving their own problems for them.

    What shall I say? I have already written several times about this in my blog. And you all have your choices to take care of yourselves – or to place yourselves into somebody else’s hands.

    “Help yourself, and Heaven will help you.” – De La Fontaine

    Be well everybody

  5. Pingback: Weekly Round Up | Journeying Beyond Breast Cancer

  6. Pingback: Latest news from Cindy.. Can I let Compression go? | My Lymph Node Transplant

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