TE TROUBLE
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Purple...omg, I can't imagine the madness you've been going through. No infections have happened along my journey. I did use up my FLMA this year while out on short-term disability and also was let go by the employer. So far, I've used Cobra but it is indeed expensive. I'm turning my future care back over to the VA Hospital so thankfully I won't be purchasing health insurance.
I would mention - when out on short-term if you get released from employment it is an automatic switch to long-term disability.
Please - do what ever is needed to get WELL first, then attack the other.
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I was on Long Term disability. ...😢
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I'm sorry ladies I don't mean to be so discouraging. I'm just so mad that I'm back to square one. At a very high cost. I know it will get better. I have faith. Thanks for letting me vent. Hope and prayers for you all.
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purple - I am so sorry, is there a plan for any further recon for you? Has your doc offered any rationale for why you seem to be having such issues? I am sorry too about your job situation - I am sure you are stressed to the max. Do you have any family nearby that can help?
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Screaming for you purple....sometimes this she@t REALLY isn't fair!
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Purple - vent all you want. We get it. Sending hugs.
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At this point I have decided to just keep everything gone. I'm gonna let my body heal for about a year and then I will try reconstruction again. My Dr has no explanation why I keep getting infections or opening up. He is as frustrated as I am. Yesterday's surgery was more intense then he expected, so I'm in extreme pain again. He told me he had to remove the capsules on both sides because they were making me drain and not heal.
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purple - you are flat bi-lat now? I think this is a good idea for you - you have been through so much. Doing this will allow you to regain your footing. Maybe at some point consult someone integrative who can help you with immune support before you try again which could help with infection fighting. I am so sorry - I know this is a disappointment - but regard it as another step in the direction you want to go, if you can. Sending you a hug - girl, you need one! I will keep you posted on whether the fat grafting helps me in terms of stregthening my skin so that it can stay closed when I try an expander again.
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SpecialK yep, I am flat bilateral. I'm so upset that I'm back to square one, but it is what it is. At this point I think my decision to hold off on reconstruction is the best for my body. 17 surgeries in 18 months is just to much. Thank you for your support it means a lot to me.
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purple,
Call your insurance company and ask them what places they work with for post mastectomy bras and prosthetics...get a script from your doc for prosthetic bras even if you never plan to use them.
I can not explain it in words but the woman who fitted me after I filled those steps made me feel so at peace with my own body. I walked in feeling ugly and angry. The fitter asked me what my expectations and needs were and I almost laughed at her. I said something like, "my need is to just be normal but my expectation is to be scared and deformed for life."
I wish I could remember what she said to me in the 2 hours we talked as she fitted me and had me trying on bras, forms etc. All I know is I walked away feeling better than I ever felt leaving any therapists office and my insurance covered it all! Lol
That women I worked with works with women every day who have had their dreams crumpled or at the very least are experiencing poor body image issues. She really understood my NEEDS better than I did!
Just a thought...
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purple - take a deep breath and just let it be - I have been half-flat since May, I am used to it now. Still don't like it, but I am used to it. I probably won't have an expander until next May, so a year of half-flat. You have had a ton of surgery - I have had 13, but that has been over 4 years, so nothing like you have experienced. PM me anytime, or post here, we are all pulling for you and understand how hard this is. I hope things settle down for you and you have a time of peaceful healing.
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Radical, I wish I had the insurance to do that but I lost my Insurance in Oct when my job terminated my employment.
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SpecialK thank you for your support and kind words. It is extremely frustrating.
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oh shit purple... I actually knew that. Ok, plan B...Just not sure what THAT is!
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purple,
I am so sorry for all you have been through.
Here are some organizations out there that offer free mastectomy bras and prostheses nationwide if you are interested. I only post it here as you mention you wished you could do a fitting for post-mastectomy bras but no longer have insurance.
The AABCP Foundation is a non-profit organization that provides assistance to breast cancer survivors in need of post mastectomy external breast prostheses and appropriate supplies necessary. You can apply for a grant at www.giveaabcp.org.
Knitted Knockers is a non-profit with groups of volunteers across the USA who knit and crochet prosthetic breast forms for mastectomy patients and they will send you one or two for free. You can also download a free pattern: http://www.knittedknockers.info/
The All4OneAlliance has a breast form fund (up to $300 every 2 years), garment fund (up to $100 a year for mastectomy bras, etc), and softee program (one free softee): http://www.all4onealliance.org/breast-cancer-resou... (they also have a radiation bra program and a lymphedivas program for others who may be reading). They have a register of fitters who work with their program but I believe you can also provide them a name of a fitter you wish to see as well.
Nordstrom's will also modify any bra you buy from them to hold a prosthesis (or 2) for free, but you should call to find out which Nordstrom's offer this service (and of course, requires you to buy a bra in first place which might not be feasible for you right now).
You may also want to check with your hospital/cancer centre, or your nurse navigator if you had one. Many cancer centres/hospitals either provide free temporary prostheses or may have a list of resources (like prostheses banks - in Canada for example the Canadian Cancer Society's Breast Prosthesis Bank (BPB) provides free, permanent breast prosthesis and mastectomy bras to women who meet the low income requirements and do not have extended/private insurance that would cover them ) that may help you. I know there are many smaller organizations that do provide free prosthesis and mastectomy bras, but I am not sure where you are so did not want to just start lising them.
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Also, contact the American Cancer Society. It's worth it to check with some of the mastectomy shops as well. I know I donated the forms and bras I no longer need to a shop here in Tampa. They were thrilled to receive them, specifically for those women who do not have coverage for these or can't afford their part of payment even if do have coverage.
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This October my knit/crochet group made and donated chemo caps....I'm thinking the knitted knockers are much more entertaining! The patter is unique and it's fun to say!
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Thank you ladies I will check these sites out. What my open incision looked like. I downloaded 3 pics but I'm not sure if they all crossed over. If they did. It's my right and left open and then what they look like closed after Dec 5 surgery
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Right side
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Me all closed with drains. This is 2 days out of surgery so I'm swollen.
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purple - dang, that is a mess for sure, makes my heart hurt for you. I don't know where you are but the American Cancer Society operates Hope Lodges in larger cities, near some cancer centers. I will link the location list. Many of the Hope Lodges have gift closets and they will give wigs, hats, scarves, but they also have mastectomy bras and prosthetics for free - you just have to provide your physician info. I also potentially have a source for free prosthetics that I can check for you. I will find out about that and if they are available I will PM you and get an address where I can send them, if you would like. I will get back to you asap on that.
http://www.cancer.org/treatment/supportprogramsservices/hopelodge/
Also, try this for financial assistance with medical supplies:
http://www.patientadvocate.org/NURD/index2.php?application=financial
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I think I'm going to go look for my leftover pain killers....omg. That looks absolutely painful!
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No kidding! At least the sutures were not showing when a Seroma burst the incision on me since it had been 30 days after surgery.
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I'm in Houston. Thank you Special
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Looks like a Hope Lodge is coming to Houston, but they are not breaking ground until 2015 - too long to wait for you!
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aw purple. Sh*t.
I too was terminated after using up my FMLA. But i had long term disability and they continued to pay out after I was let go. I had to apply for social security disability in order to keep the disability from my work. Alsup works with you to apply. I actually got it. Call alsup and see if they could help you. All they do is file ss disability claims for people. That's how they make their money. I had to pay the 5 months S'SD gives when you get it. But my long term disability had already paid that so it was fair I guess. Good luck. Sometimes life sucks.
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purple - I had an oncology appt today and stopped in downstairs from their office at the location I mentioned that had prosthetics. I was able to get two well matched ones for you if you would like them. I had to guess at a good size, and erred on the generous side - it might be easier to get a mastectomy bra than the prosthetics since they are more expensive - these ones are nice and comfortable with the flat back. PM me an address and I will send them to you if you think you can use them.
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You are a good friend, Special K.
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Thank you SpecialK, you are awesome. I sent you my address. I can't wait to receive. GOD bless you for your kindness.
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sandra - It was an easy thing for me to do, I wish all of our recon problems could be taken care of so simply!
purple - Got your PM - sent you one back - they will be in the mail asap! In the meantime call the ACS and see if they can hook you up with a mastectomy bra or two.
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