GRRRRRRRRR I HATE LE..........
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I have 4 compression bras. I have the one you mentioned and I love it! It's so comfortable and my chipbag/swell spot wrap fits in it well. I have a wear ease that's also very comfortable. I just have to weat a nipple cover on the side that doesn't have the wrap because my headlights are always on! Then I have 2 Belize bras. I have a love hate relationship with them. They are the ones that turned my truncal LE around. They are comfortable. They just make my DD's look like a coffee table!
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2 more days of antibiotics and I'm done!! I have not had diarrhea it wow the gas! HOLY SMOKES! Is that me...enough said lol! Rash is almost gone. I have a few spots but not bad. The heat seems to bring it out more.
Hope everyone is on the mend and feeling joyful.
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DONE! Rash is gone and I have finished the antibiotics. Tomorrow I'll start back with my Flexitouch pump.
Hope all are on the mend!
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Yay, vargadoll!
Lyn
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JO, I have no idea what this could be but I tend to believe, like you, that it is connected to the fly bite. My ideas have probably been mentioned before but I'll throw them out anyway -
Have you reached out to the NIH or CDC?
Coming at your problem from another angle, have you looked for an LE specialist (doctor or PT) in some other locale (possibly associated with a large medical teaching or research facility like OSU or the Cleveland Clinic)? Even though I live near DC, I went to Duke Medical Center for an LE consult because they had a designated Lymphedema Management Program. Maybe your LE is creating enough of an unusual response to the fly bite that doctors unfamiliar with LE (& that's just about ALL of them) are having trouble reconciling your response to possible causes with which they might be familiar. Even if they are unable to determine the specific cause, an LE specialist might be able to address the effect of that bite.
A last ditch suggestion - have you seen a vascular specialist?
So sorry that you're dealing with this additional problem. Hoping you find answers - & healing - soon!
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Jo, she does not sound qualified to me either! Is there any way to get approval to go out of network? (I'm on Medicare & used Tri-Care prior to that so I don't have much experience with traditional insurance.) Sending hugs ... hope you get answers soon!
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Jo - I agree with JLK. Is there any way to get approval to go out of network? Or is there any way you could at least travel for a consult?
After my first surgery, my BS, my PS and my MO all thought I shouldn't worry about LE. I went to a major wound care & LE center and the top doc there said yes, mild. After my ALND surgery & radiation - those same docs still thought I shouldn't worry or question. Luckily my RO realized there was a problem and hooked me up with an experienced therapist at MD Anderson, although none of my other docs are there. I credit her with solving several issues and with the fact that my LE hasn't progressed any further.
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Joanne, this is such a bummer! It's almost like you're trapped with nowhere else to turn, but I still believe you'll get a helpful answer eventually, because there is one out there, I know!
I'm still thinking this is remarkably like the inflammatory response that we see more often with breast LE. Lots of antibiotics tried, some lightening of the redness but no resolution, and activity makes it worse. The usual answer to that is the application of a topical anti-inflammatory while undergoing LE treatment by a knowledgeable therapist. I wonder, if you went back to the (now recovered, I hope) therapist armed with a couple of names of other therapists she could consult with, if she'd be willing to smarten up. To do that you might get on the phone to places like OSU and the Cleveland Clinic, as JKL suggested above. Or check out the listings at StepUp-SpeakOut for names of well-trained therapists to call. I've found these people to be surprisingly receptive to patients, since they're aware our doctors often know far too little. Explain what's happening and your insurance issue, and see if they have suggestions or would be willing to answer questions from your therapist.
Also, I'd check out the training of the other therapists at your hospital who are under the therapist you tried--there's a really great young therapist here at my cancer hospital under a completely inadequate older therapist. Worth a look!
And yes, it's certainly possible this is not an infection, but that doesn't mean it's going to stay swollen. Not!
Onward, Joanne--you're gonna get on top of this!
Hugs, prayers,
Binney0 -
Jo - thanks for reporting in but sorry to hear there's still no answer. Are you getting along OK with the Doxy? I know you have antibiotic issues. Has there ever been discussion about going with a stronger med like Vancomycin? Below is from the Mayo site about staph. I only mention it because I had a bug bite turn into a massive staph infection one time.
Vancomycin increasingly is required to treat serious staph infections because so many strains of staph bacteria have become resistant to other traditional medicines. But vancomycin and some other antibiotics have to be given intravenously.
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Jo, wish I had something to contribute besides my concern. I hope it resolves soon. Sending you healing thoughts ...
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Joanne- sending prayers and good vibes! Wish I had a magic wand!
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Jo - we're keeping you in our thoughts.
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Joanne- thinking of you! I saw my PT this morning and will start regular use of my Flexitouch pump tonight. I have some swelling in my trunk and breast. My PT said to wear my swell spot wrap under the pump. I am super tired and have had a headache for 2 days now. I ate things I normally would not eat on the 4th. Nothing really bad I had a turkey sandwich but it was on a croissant, chips, and a Cherry Berry cobbler with vanilla ice cream. I have been limiting my carbs and I know that's why I've lost 16 lb. Feel like it's going to take a few days to get my body back to where it was plus I just finished the antibiotic 6 days ago. June was hard on my body!
Have a relaxing Saturday night!
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Joanne-how are you? You have been on my mind alot! The grandkids have been here alot this week and they have kept me busy!
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JO, I'm so very sorry that you're going through this. Just hold on to the thought that others on BCO have been told by their doctors that they suspected cancer & then had biopsies come back negative. It still seems unlikely to me that this would appear at exactly the same time as your fly bite. I wonder if all those antibiotics are affecting the rash? Could any of your doctor's reach out personally to colleagues that are out of your network to ask for their input? Would you feel comfortable asking them to do that?
We're all keeping positive thoughts for you. Pls keep us posted.
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Joanne - I'm so sorry you are having to experience all of this! No wonder you have been on my mind! The articles makes sense to me. I also know that their isn't enough trainer medical staff to handle LE and the issues that come with it.
Please keep us posted keep doing your own research!
(((((Gentle big hug)))))
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Joanne, I'm so sorry you're faced with this now. And waiting for a week is beyond awful. But I have to agree with you that this is really consistent with an inflammatory reaction. Such conditions associated with LE are not unheard of. I hate that you have to wait out this week with nothing to do about any of it. I'll be praying for those moments of confidence and peace in each day that passes.
The night's can be hardest. Do you have anything that can help with anxiety or sleeplessness? And, yes, the thought of a biopsy on a LE arm is daunting, but hopefully it will also be both reassuring and enlightening. Do share that article with your doctor when you see him next week.
Hugs, prayers,
Binney0 -
Joanne, can you use a topical anti-inflammatory? Seems like that would have fewer side effects, and heaven knows you don't need any more.
No surprise that our doctors don't know much about LE and inflammation, since no particular medical specialty "owns" LE. it's kind of a no-man's-land. But LE is, at heart, an inflammatory condition, which is why it builds up hardness under the skin over time if it's not controlled. And being that the lymphatics are part of the immune system, it's no surprise that healing in an area affected by LE can take longer.
For goodness sake don't apologize for the "ramble"--it's more like brain-storming, which is what we all do when we're trying to work our way out of a mess like this!
Look for the moments of joy today--you are loved!
Binney0 -
Jo - Binny does it best!!! Sending even more love. I'm still suspicious that it's infectious & inflammatory and you might need an IV antibiotic like Vancomycin.
Vancomycin is an antibiotic used to treat a number of bacterial infections. It is recommended intravenously as a treatment for complicated skin infections, (from Wiki)
I can't take Benadryl either. It makes me goofy or totally knocks me out & in the morning I feel like trucks have been running over me all all night while they constantly removed & installed a trach tube. I'd go for the Xanax if it helps you sleep. (I'm thinking of trying Zyrtec for my constant itching.)
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Joanne- you were not rambling at all! Even if you were...that's part of what we are here for!
Sending good vibes and healing thoughts!
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Joanne - I think it looks a little better to! It's not as red and angry looking. I'm still relatively new to LE so I'm not much help other than prayers!
Teresa
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Jo - I do think it looks a little better. Seems to me the swelling is down some and it's not quite so red. If you are in denial, I would be in the same place. I believe & hope that it is not cancer.
Sorry I don't have any info about biopsies on LE affected parts. I have had the derm doc freeze various growths with no bad results. When are you seeing the breast doc? Is it a breast surgeon or a medical oncologist?
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Joanne, I agree it looks some better, but like you I really wish it would just go away! Still, if elevation helps, that hardly sounds like a cancer issue, so there's some encouragement there.
I really appreciate your keeping us posted here, as we're all really wishing we could be right there with you.
Onward!
Binney0 -
JO, I agree with the previous posters - it looks less inflamed & less swollen now & that doesn't sound like cancer. I also agree that it's unlikely cancer would respond to elevating your arm. I think all of these things argue against this being cancer & I would hold onto that thought. (And if Binney thinks that, there's a very good chance it's true - she's our expert!)
Have you reached out to ChiSandy? I'm not certain but I seem to remember that she had had issues with both her arms recently. Since she has LE, she may have had some experience with surgery or injury on a limb with lymphedema. Even if she doesn't have personal knowledge about it, she's really well-informed about all things medical & she is always generous with her knowledge.
Hoping you get answers soon!
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Oh, Joanne, this is one heck of a trial, for sure! Did the BS have an opinion on the Lebeds, sleeve-wearing, and MLD? If not, I'd say you're on the right track to be taking some action on clearing lymph fluid, and also smart about paying attention to not wearing the sleeve for very long at a time. If you could wrap gently, that would be ideal, or use a night garment. Sigh!
A well-trained OT is absolutely fine. My fantastic LE therapist is an OT. She's been extra helpful, in fact, in suggesting practical ways to adjust to daily tasks--which is a big part of what OTs do. But training (and hopefully, experience) with treating LE are the important factors to look for initially.
Onward!
Binney0 -
My educational background is OT! I have not worked in years but keep my CEU's up so I don't lose my certification. My area of expertise is Pediatric and early invention. When I start working on my CEU this go around I'm doing LE classes! Can't hurt! I do see the big demand for more LE help!
Joanne - still lifting you up! Hopefully insurance will get the ball rolling and you can get this fire under control!
At the oncologist now for my 3 month check up.
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Jo - All my MRIs have been lying on my back. I don't regularly take any prescription drugs, but I do take a mild Xanax before an MRI. I get anxious & just can't stay still enough - not to mention the obnoxious machine noise.
Keeping you in my thoughts. Hang on to the doc thoughts that it's NOT cancer.
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Joanne - I want to drive to Ohio and give you a hug! ( a gentle one of course) I told my DH a few days ago that I (almost) wish I had not done the SNB! The BC was a cake walk compared to the LE. I didn't even find out about the small (that's what I was told) percentage of people who end up with LE until my pre-op appointment a week before surgery! I just paid over $400 in medical bills all from my LE care. I'm still a newbie but I get it. We all have to go the extra mile to stay health and protect the LE areas. The extra time out of our day to manage the LE.
I'll leave you with this.
Isaiah 41:10 " Do not fear,for I am with you;do not anxiously look about you, for I am your God. I will strengthen you, surely I will help you, surely, I will help you,surely I will uphold you with My righteous right hand."
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I've been 'gone' from the site for awhile but just wanted to chime in and say I HATE lymphedema. I hate it so bad I had to re-type the word three times to get it spelled correctly.
I named my arm 'Little Martha'. Long story since my name is Diane, but since my arm controls my daily life, I figured she deserved a name. It's someone I can yell at when I am 'done' with LE.
So - - - why am I back? Cuz I needed to whine and only LE people fully understand LE. I feel like my whining falls on deaf ears to those around me - or they just look at me as a whiner. I know they love me and I know they care and I know they would fix it if they could.
It's been 7 years and I still haven't wrapped my head around the fact that LE is here to stay. One night/week of LE care is only one night/week. It's a daily challenge and I just don't like it. Wow - that sounds like denial, even though my arm is aching as I type and there is no denying LE is a part of my life.
I am overweight (and on Aromasin), 64- not a spring chicken but still have a lot of life in me. I also HATE the words diet and exercise. But this is where I am. Oh - I'm retired. Really, I got laid off but retired in order to provide care to my parents until they passed (10/15-12/17). Now that the 'estate' is done and I am facing my real life of retirement I want to focus on me.
I need encouragement. Is there a board on here with LE people on AI's that are trying to lose weight?
Today is the day I want to make a change - -- HELP!
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Diane, welcome back! We sure do hear you. It's not whining, it's simple weeping over a lived reality. There's room for that, since it's part of how we make it one day to the next. Here's an article I like about dealing with the impact of this chronic condition:
http://www.stepup-speakout.org/patoconnorcopng.htm
There is a thread here for the constant battle to stay on the exercise wagon, and there's usually plenty of talk there about weight issues too. I'll go bump it for you. It's been quiet lately because our well-loved "Hugz", who is an empathetic powerhouse about exercise and weight loss, has been away from the boards dealing with everything else life throws at us, but hopefully she'll be back soon.
Hang in there! And please let us know how we can help.
Gentle hugs,
Binney0
