Lymphedema, Another Reason for Self-Advocacy

Lymphedema is another reason for self-advocacy alright.

As a follow up to the previous great guest post by Jan, I decided to share a little about my limited knowledge and experience with lymphedema. This is an important topic that is not given nearly enough attention.

I read somewhere that every woman (and man) who has had breast cancer surgery should consider herself (himself) to potentially be a person with lymphedema. That might sound extreme, but it does emphasize the importance of taking this subject seriously.

For whatever reason, this is one area where I did not receive much information following my cancer surgery. I was told to not allow blood pressure readings and blood draws on my “bad” side (the one where fourteen lymph nodes had been removed), and that was about it. I don’t remember the word, lymphedema, even being used. Since I wasn’t given information, I didn’t worry or even think about it.

How could if I didn’t even know about it?

After attending one of my support group meetings where the topic that evening was lymphedema, I thought, wow, I need to get my arm checked out. I had more than one of the symptoms listed on the handout we received that night. These symptoms had been on my mind, but I really didn’t know what to make of them.

At that particular meeting, I sat by a wonderful, older woman who had had breast cancer 35 years ago. She told the group she developed lymphedema about 18 years after her diagnosis. Her case was quite severe and obviously causing her discomfort and anxiety. She also confided to us about her radical mastectomy and the fact that reconstruction was not even an option for her back then.

I couldn’t help thinking to myself how far we have come in some things; but on the other hand, too many things have not advanced  far enough or fast enough.

We need considerable more RESEARCH and advocacy on many fronts, including lymphedema.

Following that meeting, I scheduled yet another appointment for yet another evaluation. At that evaluation, I learned much more about the elusiveness and unpredictability of this condition called lymphedema

After my evaluation, lymphedema was not confirmed in my arm, but it wasn’t “not confirmed” either. This is also quite common I learned. There is not universal agreement even as to what truly constitutes early stage lymphedema. Clear standards and uniform diagnostic criteria are not fully agreed upon by all in the medical field.

I do have slight swelling in my armpit. I had a couple of questionable measurements, and I sometimes have a tingling and heavy sensation in my arm. I have limited range of motion in my affected arm, and it just feels “off” at times. Based on these things, we decided to go the preventative, just in case, route.

So my next stop was to get fitted for a compression sleeve, another evaluation, but this one was easy, just sizing!

Now, I am trying to figure out when to wear my sleeve. There isn’t anything really definitive here either. It seems to be kind of a figure out what you need, and do what works best for you approach.

Lymphedema, another reason to self-advocate

In addition to the many resources listed in the previous post, I want to recommend a book I found to be really helpful. It’s called Lymphedema, A Breast Cancer Patient’s Guide to Prevention and Healing, by Jeannie Burt and Gwen White, P. T. It’s a quick and easy read that covers the whole topic quite thoroughly. It’s an informative reference book to keep on your shelf and answers a lot of questions that might come up.

One simple, yet to me, profound statement that really stood out in the book was this:

(In the past) Most women were told that nothing could be done for it (their lymphedema) and to just live with it.

How often have women been told that through the years?

How often have women been expected to keep quiet and just accept?

For years, this condition was trivialized by some doctors, and women were led to believe there was nothing that could be done for them.

Carolyn Renowicz, M.D., director of the Division of Gynecological Oncology at Albert Einstein College of Medicine, says:

Some doctors trivialize lymphedema, dismissing it as ‘just a little swelling’ that is a small price to pay for cancer treatment.

Outrageous really, because lymphedema is a serious condition and if left untreated can be emotionally as well as physically devastating.

Lymphedema is one more reason for self-advocacy.

If you have symptoms, get them checked out. If you have questions, get them answered. And, as is the case for most things, be your own best advocate. Speak up. Let your voice be heard.

If someone doesn’t listen to you, find someone who will.

Do you have lymphedema or do you know someone who does?

Did you receive adequate (or any) information about lymphedema with your treatment plan?

Have you ever been told to “just learn to live with it”?

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#Lymphedema, another reason for self-advocacy #breastcancer #cancer #womenshealth #advocacy

51 thoughts to “Lymphedema, Another Reason for Self-Advocacy”

  1. I was very lucky to have doctors who take LE very seriously. They informed me of the risks/warning signs, but also encouraged me to lead a normal life – just stay aware. After a couple of mild episodes I got fitted for a sleeve/glove, which I only wear when I’m doing some of my higher risk activities (like rock climbing or high altitude anything).

    When I was diagnosed, the recommendation was still to limit activity – never lift more than 5lbs! Times have changed. Now, any doctor who pays attention to LE knows that much research has shown that exercise is one of the best things we can do to prevent & manage LE. The key is a very gradual progression.

    Good luck. You’ll figure out what works best for you with the sleeve. It just takes some time.

    1. Julie, Thanks for commenting about your experience with lymphedema. I am so glad things have changed and it’s now recognized that exercise is good for preventing and managing LE. It only makes sense really.

  2. Hi Nancy,

    This is such a necessary posting, and I’m so glad that you are devoting time to discuss Lymphedema, which a lot of people seem to forget in the wake of breast cancer treatment.

    My hospital and doctors took it seriously, as well. I got physical therapy, which helped sooooo much. I highly recommend physical therapy. I could barely use my arm.

    I have to admit, I’m not always careful enough. I don’t wear my compression sleeve because I feel rebellious.

    Anyway, it’s an important topic. I heard from one of my former support groups that Lymphedema can also be caused by the radiation to the chest. I don’t know if that’s true. Anyone know?

    1. Beth, yes, I believe that radiation to the chest can cause lymphedema. Lymphedema isn’t limited to the arm, but can occur in the breast and the chest area. Anything that is a trauma to the body can cause lymphatic blockage, and radiation is certainly trauma. I’m so glad that you got physical therapy.

    2. Beth, Thanks for commenting and agreeing this topic needs more discussion; it’s too often neglected. I am having physical therapy now and I think it is helping. My arm was really not in “proper working order.” I have heard that women who under go radiation are more at risk for lymphedema, which only makes sense when you think about it. Were you diagnosed with lymphedema, Beth? Or was your arm just “out of order” like mine?

  3. My surgeon referred me to a physical therapist as a routine precaution. I went 3-4 times and learned manual drainage and got fitted for compression garments before I needed them. Two months later, an allergic reaction triggered an episode of swelling. I went 3-4 times a week for the next month or so to get it under control and learned how to bandage my arm. I’ve learned to live with it, but am very thankful that Kaiser Permanente in CA took it very seriously and gave me warning and the tools to manage the condition.

    1. Tonya, Thank you for leaving a comment here again. I’m so glad you are joining in on this discussion. You were lucky to be referred as a routine precaution. An allergic reaction set off your lymphedema then? That was pretty scary I bet. I’m so glad you are doing well now and have learned how to manage your LE. Good for you.

  4. I was fine until I fell on my arm last winter. Now my lymphedema comes and goes. I was told that the sleeve is like a girdle, after a few days you don’t feel it! HAH! You do. It gave me a tan line on my wrist last year. I wear my sleeve when I fly and when I work out at the gym. Otherwise, it drives me crazy so I don’t wear it. They take it very seriously where I am treated as well.

    So its under control but in the last six months I have developed an allergy to the little silicone bumps on the inside of my sleeve that keep it in place. So now when I wear my sleeve for more than one day at a time, I have to wear it inside out and it doesn’t stay up very well. I am mystery to the lymphedema clinic here.

    1. Caroline, Thank you for sharing about your situation. The sleeve is like a girdle, ha. That’s pretty funny and true I guess, although I have never worn a girdle! Have you tried different sleeve manufacturers? Would that make a difference? I have heard there are some sleeves available that are made specifically as special order to meet individual needs. I can’t remember the site though… Good luck, I hope they figure your mysteriousness out!

    2. They have a glue that works for holding up the sleeves, I use it for the support hose for my legs, I got it at the vein clinic.

  5. Great information, Nancy, and your personal story was very compelling. It’s similar to mine except that I did develop lymphedema. I’ve heard of that book you recommended, but it’s not in my lymphedema library. I’ll have to buy it.

    Research into the causes, prevention, and treatment of lymphedema is in the infancy stage as compared to breast cancer research. We have a long way to go, but slowly the field is developing, including the advice about exercise that Julie mentioned. I was also told to lift no more than 5 pounds back in 1997, but I’m glad that has changed over the ensuing decade.

    I wasn’t told just to live with lymphedema, but certainly Ingrid Bergman was, as I mentioned in one of my early blog posts. What a travesty of justice! If people are still being told that, I am outraged!

    Thanks for bringing more awareness to this little-known condition that can alter lifestyles completely, but for which most people are totally unprepared. Its devastation on the psyche as well as the physical state should not be unestimated.


    1. Jan, Thank you for commenting. Yes, they didn’t really determine my symptoms are actually lymphedema, so just working to prevent it as of now. There is such a great need for research in all areas concerning cancer. We need to get off the awareness bandwagon and get onto the next level. Thanks again for your great guest post. So full of information. And yes, that Ingrid Bergman post was heart breaking. I should have included that link. People would love to read that… Thank you for being such a great advocate in this area, Jan. You are doing important work.

  6. Yet again Nancy, you have drawn our attention to a very important subject.
    As my case is most unusual [are we surprised?] if you do not mind I would like to cover it more fully in a later Post on my blog.
    Lovely to read what you have had to say.

    1. Chez, It’s good to see you stopping by and thanks for commenting. Of course, I don’t mind and I look forward to reading your post. Hope things are going ok for you.

  7. This has been a hot topic! People are not getting the therpay they need. As an occupational therapist, I see the negative effects from doctors not utilizing therapists, especially ones who specialize in lymphedema/ breast cancer care. I see it my self, my shoulder are a mess. I was sent to a a therapy dept. that did not specialize in cancer/mastectomy/lymphedema. I started doing my own exercises. Later since I was continuing to have pain, I called my doc, and he sent me to pain mgmt. That is not where I needed to be. I realized this after a couple of weeks. I called the doc and asked for a therapy order for manual therapy and lymphedema. There are just some things we ccan’t do on our own, “manual therapy”. I had a lymphedema consult as well with the therapist. At this time I do not have any. Here is what I know: There are many forms of Lymphedema mgmt techniques, measurements and such. This time I did my research, I highly reccomend only seeing a therapist with lymphedema experience. My PT has 15 yrs experience. She knows what she is doing. Therapists so not get specialized training in school for lymphedema, you have to do that on your own. If someone is LANA certified or an LMT you are going to be in good shape. However, the mose important thing is experience. I recently just signed up for 2 lymphedema courses online, I prefer to be hands on, but at this current time I can’t afford some of the larger courses. I did, on the other hand, choose courses that were up to date one is a video series from 2011 the other is regarding cancer massage, myofacial release, and lymphedema drainage. So, I hope to give more information on my page after I finish the courses. But at this point in time, I still suggest seeing a lymphedema specialist that specializes in mastectomy/cancer care <3 Laura

    1. Laura, Thank you so much for commenting on this hot topic as you call it. Also, thank you for making such an important point about being sure your physical or occupational therapist has knowledge and training in lymphedema. This is critical. I was also told to be really careful if you are a person who sees a massage therapist. If you do, your massage therapist should also have proper training in lymphedema and obviously they all do not. Again, one must be their own best advocate.

  8. The hospital I am being treated at does take lymphedema very seriously and set me up an appointment for a sleeve fitting and to learn how to massage the lymphatic fluid out of my arm. They only took 4 lymph nodes, so I was a bit surprised. They told me that the radiation will mean I am a high risk, so I am in the habit of wearing my sleeve when I work out and will wear it someday when I am done with treatment and get to fly again!

    1. Mandi, Thank you for taking time to leave a comment. I apprecitate it and I’m really happy to hear your doctors have taken lymphedema seriously. Radiation does place you at greater risk, so being proactive is great. When will you be finished with your radiation treatments? I hope you are doing well. My best.

  9. I was quite fortunate. I was given information on lymphadema at my followup visit with my surgeon. I had some questionable symptoms quite soon after after surgery.I had some swelling, numbness. Emphasis was placed on the importance of eary intervention if symptoms progressed, I was to call them right away. The edema eventually resolved (still have some numbness from manipulation of brachial nerve) I am cautious, I know it can occur years after the surgery. I try to be smart, then just hope for the best

    1. Garden Lady, Thanks for sharing about your experience. I’m glad your edema resolved itself and that you were given information as to what to watch out for ongoing. Knowing what to be on alert for is so important isn’t it? You’re right, we must be smart and viligant, then hope for the best as well. Thanks again for stopping by.

  10. first off thanks so much for your comment on my blog.. it is a tough day and makes me avoid the card isle like a madwoman as it approaches.. good vibes to you on that day as well!

    secondly i loved loved loved the guest blog post and this follow up.. even for those of us without cancer it is a firm reminder to be our strongest advocates and never to assume a doctorate degree is the end all!

    1. Ana Marie, Thank you for your comments as well. I really appreciate your feedback. You are so right, you don’t have to have cancer to relate. Everyone needs to be their own best advocate and we don’t need to feel intimidated by those advanced degrees! Good point.

  11. I’ve been a stickler for wearing my sleeve when I fly, work in the yard or lift weights. The one thing I couldn’t have predicted was being stung by a scorpion 10 days ago while I slept. In addition to my arm swelling at the site of the DOUBLE sting, my lips and tongue went numb and I had trouble walking, as if I were spastic. An ER doctor speculated that the removal of six lymph nodes from that arm might have enabled the scorpion’s neurotoxins to impact me more. Everything’s back to normal except for the sight itself which itches and is still swollen.


    1. Brenda, Thanks for adding to this discussion about when you wear your sleeve. Getting stung by a scorpion, now that’s something you can’t prepare for! That must have been a scary experience. Thank goodness your reaction wasn’t any more severe, although it was certainly bad enough. We don’t have scorpions in Wisconsin and I’m glad about that!

  12. My cancer was 11 years ago. I was diagnosed with lymphadema in my left arm. I was told there was no treatment, exercise, or therapy for it. Then I was told a lot of don’ts. Don’t lift over 10#, no rings, no watches, no flying, no going into the mts, (I live in Denver, a mile high city so that really didn’t make any sense to me), no gardening, no shots, no blood pressure cuffs. etc. etc. I was told to buy a sleeve, no instructions on that. I promptly ignored all of it, except for shots and cuffs. I quickly learned not to push up on that arm when I was crawling around weeding. I dropped a kettle of chili I was taking of the stove on my brand new kitchen carpet, when my arm went numb. I learned by trial and error. Not to long ago I was sick in the hospital again for an unrelated illness. I refused all shots, IVs, blood glucose tests and cuffs on that arm. I was told by one young man in an ambulance that since my cancer was more than 10 years ago he could use my left arm and I refused. So thanks for the update. My arm rarely swells any more. I am very lucky. One of my friends daughters is now a theraphist specializing in lymphadema. Thank God for progress. Your post and the comments were great.

    1. Betty, Thanks for sharing about your lymphedema experience. I didn’t know you had it. Being told there was no treatment must have been frustrating to say the least. It sounds like you pretty much figured things out on your own. Good for you for refusing to have stuff done on your left arm in the ambulance. Great example of self-advocacy! And yes, thank God for progress, at least in some areas. Glad you are doing so well, Betty.

  13. We have a support group here for lymphedema; do they have one in your area? I too did not receive any information re: it, but fortunately I had read up enough on it, so I’m pretty proactive and protective.

    1. Lisa, I’m glad to hear you have a support group specifically for people with lymphedema in your area. I’m not sure about here since I haven’t looked into it. There probably is one. I wonder why you didn’t receive much information either, but you were on top of things, so that’s what matters. Thanks for commenting, Lisa.

  14. Nancy,
    After my hysterectomy, I developed truncal lymphedema. I now where a sleeve and a cami. When I first started having issues, I had a wonderful physical therapists who taught me MLD (manual lymphedema drainage.) Her kindness and knowledge made a huge difference in my treatment and recovery. Although it is a bit discouraging to have to where the hot sleeve during the summer, it sure helps to keep the pain at minimal. Yes, I agree…there needs to be more education about the complications of mastectomy. Thank you so much for continuing to bring awareness!

    1. Kim, Thanks for commenting about your experience with lymphedema. I don’t know what that word ‘truncal’ means for sure, I’ll have to look it up. I’m so glad you found a wonderful PT, I have one too now. The profession is way under appreciated! I don’t like the sleeve either much, but I am glad I have it now and can wear it when necessary.

  15. Nancy,

    My comment is a bit late . . . great post. This is such important information. I have had some issues and also did not get a great deal of information on this topic. I was told that I probably would not have any trouble with it. Hmmm. 🙂 Well, I have some now (didn’t until recently).

    Thank you for the book reference. I am going to look for that and read it. It sounds great.

    What a sad day this has been. It is nice to hear of something that can be done about something. I look forward to reading the book you recommended.

    All the best,


    1. Lisa, Thanks so much for leaving a comment and it’s never too late! Interesting that you were told you probably would not have trouble. I know what you mean about the sad day. I hope you find the book helpful, let me know.

  16. I had to ask about LE. I saw a poster at the oncologists office but no one ever mentioned it. I didnt even know what it meant. I was also told not to have shots, needle sticks or blood draws on that arm but no one really explained why. I developed LE after tissue expanders were put in place after I had bi-lateral masectomy and started the recon phase. I went to my regular doctor about my arm and hand swelling. I had to explain to him what was going on and would he please refer me to a lympedema specialist! Crazy! The LE specialist I was sent to is none other than Gwen White, who wrote the above mentioned book. She is a wonderful therapist and she is very compassionite. She got my LE under control. I have compression sleeves that I wear a couple of times a week. My favorite one is a custom made, one piece glove and sleeve. It is my favorite because after I wear it I notice the most improvement in my arm. However, it wasnt cheap and I was lucky that my insurance paid 80%. It did take some time to figure out when to wear the sleeve, it is definately a learn as you go process. Even Gwen didnt have a solid recomendation for time to wear it other than when exercising or flying.
    Its been difficult to come up with a quick explanation when I am asked what is wrong with my arm but I am getting better at it. I am glad to educate about LE, especially after a young man asked me about my sleeve and I explained. He was astounded because he had lymph nodes removed in his arm (but I dont remember the reason) too and no one ever had mentioned compression sleeves to him for flying to prevent swelling. He was going to look into and I hope he did!

    1. Kim, Thank you for your great comment. I’m sorry you didn’t receive much info upfront. This is too often the case isn’t it? I think it’s slowly changing, but… I’m glad you found such a great therapist and have learned how to manage your lymphedema. I know what you mean about the explaining, people really wonder about the sleeves. I’m glad you are educating those you encounter, like that young man. I hope you are doing well and thanks again for adding to this important discussion, Kim.

  17. Ladies I too have lymphedema in my left arm and hand, shoulder, side and breast. My original Dr. just sent me to the therapist to shut me up, but I knew either my implant was growning or my arm was the way they rubbed all the sudden and it was very achy and heavy. All signs of lymphedema. When I got back to the clinic and told the Dr. I needed prescriptions for compression garments she said I don’t know what they are, have your therapist fax a copy of what you will need and I will send her a signed one back. Oh boy I thought I need a new Doctor, and I got one.

    1. Sherry, It’s terrible the way lymphedema was not taken seriously for so long. I’m glad this is finally changing. One woman at my support group the other night said she fears lymphedema more than recurrence. That says a lot. Glad to hear you got a new doctor. Sometimes we just have to don’t we? Thanks for commenting. It’s good to know others are still reading these posts.

  18. I was extremely lucky that my oncology surgeon referred me to a lymphadema specialist. He said I had a 15% chance of getting lymphadema. I did all of the exercises very carefully after my surgery. I ended up having more trouble with my radiated breast when I had a recurrence and need a mastectomy. Lots of surgical failures. I think everyone should have physical therapy after surgery with a lymphadema specialist. I am very lucky. I fly everywhere without a sleeve and lift 20lbs on each side of my arms. I am going to keep working out and hope I avoid the problem. My best friend had frozen shoulder and lymphadema. It’s very real. So glad you wrote about it.

    1. Susan, I agree with you about the physical therapy. After breast surgery a consult with a PT would be helpful for so many reasons, lymphedema awareness being one of them. I’m sorry to hear about all those surgical “failures”. It sounds like you are doing what works for you. Thanks for adding to this discussion.

  19. I got lymphedema after having a total shoulder replacement surgery. Two months after I noticed the swelling in my arm and went back to see the surgeon. He ran tests to see if I had a blood clot , there was none so he sent me home. No referal to see my regular physician, no comment about any other possibilities. Fortunately I had a scheduled appointment for a bi- annual check up and my ( woman) doctor recognised what was going on and referred me to a lymphadema therapist.
    I have had nurses in the hospital get angry with me when I refuse a blood pressure cuff or saline line put in that arm. Now I wear a medical alert bracelet and had it engraved with instructions so I will be taken seriously. The lack of understanding by my surgeon is what upsets me, he said he had never heard of it happening. My son’s doctor told him that I should have been warned it was a possibility in that type of surgery. Why are physicians not educated in this? Scarey eh?

    1. Alice, I’m sorry to hear that you developed lymphedema following your surgery. I’m glad it was recognized at your bi-annual check-up. It’s surprising that nurses have been annoyed with you when you refuse to have blood pressure taken in your affected arm. That seems wrong. It seems there is a need for more education about lymphedema, perhaps even in the medical community. Thanks for sharing.

    1. Susan, Congrats on the fifteen years! I am at risk as well as I had fourteen nodes out. Always trying to be aware of the symptoms…Thanks so much for sharing the link to your article. Stop by again.

  20. My surgeon told me that following all treatment (included chemo, mastectomy, and radiation) that I would “only have a 35% chance of lymphedema.” Apparently, I was the first patient to ever turn that into a fraction on her. Even she admitted 1 in 3 did not sound like good odds. She automatically sends all her mastectomy patients for therapy for both range of motion and to try to prevent lymphedema, and in addition to precautions they told me to follow and preventative exercises, I was fitted with a lymphedema sleeve to have “just in case.”

    A few weeks after radiation, my arm and shoulder became extremely painful and swollen. I went to my oncologist the next day, and even though swelling was not very severe, I was diagnosed with lymphedema, told to start wearing the sleeve, and put back in therapy.
    Today, the swelling is gone most of the time. But if I try to go without the sleeve for anything more strenuous than reading, my arm starts to hurt and swell. Some mornings I wake up with pain, tingling, and swelling, but a couple of hours of wearing the sleeve, plus doing my massages and exercises, seems to bring it back under control.

    My lymphedema therapist told me that there are experiments going on with some kind of lasers to see if they can help restore lymph vessels damaged by surgery and radiation become better functioning. Of course, they can’t grow new lymph nodes so it wouldn’t be a total cure for lymphedema, but she said the idea was to help lymph fluid better reach more distant lymph nodes. I told her if she ever gets involved with that and needs a guinea pig, I’m her first volunteer. So there may be some hope for us coming.

    1. Elizabeth, I’m sorry that on top of everything else, you must also deal with managing lymphedema. It sounds like you are managing it pretty well, so that’s good. And wow, that research sounds really interesting. Thanks for sharing about that too. I think there might be lots of people volunteering to be that guinea pig!

      1. Nancy, I thought I would give you an update. Shortly after DIEP flap reconstruction, lymphedema improved. I still need the compression sleeve for travel (even car if there is a mild altitude change), for exercise, certain housework, etc. But it is no longer a daily all day thing. I still have flare-ups where I have to go back to wearing it daily for a short while, even had one case of cellulitis, but, there has been improvement.
        Because lymphedema commonly improves after DIEP flap procedures, they theorize that bringing new undamaged tissue into the area allows for better lymph movement and drainage.

        1. Elizabeth, I am so glad things have improved for you. That is great news. That theory as to why this sometimes happens following DIEP recon makes perfect sense. Thank you so much for the update.

  21. I developed Lymphedema after an,axillary dissection, lumpectomy, chemo,.radiation for breast cancer in 2001. I am also a Type 2diabetic. After my diagnosis, I was told by Kaiser that there was no treatment protocol for treatment. I did meet with a physical therapist who gave me a few exercises and told me she didn’t think bandaging would help. ”Learn to live worn it”. I continued to have problems with swelling, I developed a ganglion cyst on my wrist. I also developed Graves Disease. Between the Lymphedema , diabetes and Graves disease, by body went crazy, could control diabetes due to graves,.lymphedema arm and underarm pit were so swollen and tight, carpal kicked in and my hands began losing feeling. Had sts perform tests on hands, the results were due to old age and , again, learn,to live with it. lost insurance and no medical help for 3years. Finally got SSD and medicare. One doctor sent me to a physical therapist and even though she had no lymphedema training, heeled loosen the scar mass under my arm. Dr retired, went to new Dr. that told me all these problems (diabetes, graves, lymphedema,.fibromyalgia) were in my . mind. He’s practices 49 yrs and knows lymphedema doesn’t hurt ir cause any disabilities. Went back to Kaiser Medicare program and primary doctor only concern was diabetes. Once we get that u.der control, we will address the other issues. After 1.5 yrs, diabetes still problematic, xray showed degeneration of my neck vertebrae, and still no treatment for other complaints. in December of 2012, Kaiser informed Social Security disability that I was only being treated for diabetes and as of March 31, 2013,.I lift my SSD and medicare. So here I sir,.no benefits, no insurance, unable to work, had to quit 8 prescription drugs ”cold turkey” due to losing benefits. I live on food bank food(thank god for them), which makes managing my diabetes by diet only impossible. I tried to get a job, but after 6 months, I can no longer close my hands. When I bend my fingers, the dislocate when trying to straighten. The surgeon who performed my breast cancer surgery apologized to me after my diagnosis. I never understood why until a few years ago….he knew this disease would drastically alter my quality of life. I’m appealing the SSD, but without medical care i(180 days before they get around to me), I’ve lost hope. Please pray for me, it’s all that left.

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