STEAM ROOM FOR ANGER
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I wouldn't feel like I was letting anyone down if things get worse down the road. But I do think we have been let down in many ways.
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A few years before I was diagnosed with bc, a friend of ours, who had Stage IV lung cancer, was visiting for a few days. My husband and I didn't offer any platitudes, just tried to behave as normally as possible. Anyway, toward the end of his visit he did say to me, "I'm going to beat this thing!" Not knowing much about advanced cancer at the time, I really thought he would, and enthusiastically agreed. Of course it's very different when the person with cancer says it. Don't mean to sound sexist, but it might partially be a guy thing.
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BosumBlues, I live near Chicago and the SOS said they were going to issue letters of that type to maybe 1% of drivers in Illinois. Even the reporter that mentioned it got cited and had to go there. I totally agree with you! There should be a way to just register online and they could just make a phone call to confirm the insurance, which I believe is how they used to do it. The reporter asked the SOS why he was singled out and why they do this and they claimed that there are more people than they'd like that get quick insurance, get registered, wait, then cancel their insurance. Because of the few, we all have to suffer.
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I think anyone that cancels their car insurance that company should notify the DMV for them to haul that person's ass in to make sure it's not a ploy.
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BB: My husband could get the "temporary" placard for me when I was first dx'd...but he had to bring in all this stuff from the Dr. saying I wasn't even ok to stand in long lines, etc. (This is here in Calif.) But when we applied for the permanent license plate, I HAD to go and present myself and sign the papers myself. Fortunately, I was doing a bit better by then, and only needed a cane and a spare seat to wait in line.
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Good grief! Sorry about the difficulties with getting a handicapped placard, but no, illegal immigrants would not have had an easier time.
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Artista...very true. It's like someone looking at you and saying, "Well at least your apple doesn't taste as bad as this orange. And I have to eat oranges every day." (Re: people saying their disase is worse or harder than ours.) I have no doubt that she was trying to make me feel better. But just like her husband's cancer, it is in remission and the effects of chemo and surgery are forever. And the target will always be on our backs like the Grim Reaper.
keepsake....re: [When someone who knows about my diagnosis tells me not to waste my time worrying about how it could kill me because, like everyone else, I could get hit by a bus tomorrow, I say "I already have been hit by a bus. Breast cancer was the bus that hit me"] LOVE IT!
BB...that totally bites. I loathe the MVA. And red tape and administrative errors like that of any kind, which stressme out more than anything. It's like the MVA wants to hold their power over everyone by taking their most precious thing away (time) because they know every driver needs a license and insurance and depends on them. And why do they have to be so mean and robotic?
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so blue cross blue shield for my company does not cover wigs, makes patients call for pre authorization on scans in addition to the Drs doing the pre-certify.. Realizing that my company negotiated this plan obviously that brainiac has never been touched by BC... FML.... this shit effing sucks!!! God help the next jackass that tells me to be positive... Here's what I'm positive about.
. I'm positive that cancer sucks...I'm positive that I'm worried about looking my job ... I'm positive that I will be losing my hair.... I'm positive that I do not have the head nor the round face to look good with no hair...
Every single outcome I wanted has been shot down from the lumpectomy to the skin and nipple sparring mastectomy.. To the no chemo to the easier chemo to rads..
Don't get me wrong I'm counting my blessings but right now I'm furious I need a cocktail but I'm too effing tired to make one 😠..
Thanks for listening
Reebs.
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Mucki, my employer specifically left cranial prosthesis out of the policy too, MD Anderson gives patients a free wig (maybe your hospital or local wig shop does too?)but I went to work bald and told the higher ups about the policy they negotiated. I also decided to try an have some fun with it and people are super nice to baldies. I hope the pic cheers you up
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Good for you Illimae...have some fun with it, Local American Cancer Society offices sometimes have wigs for chemo patients. Only thing is I don't think I'd want to wear a wig that someone else wore if they couldn't guarantee that it was "cleaned and sanitized" properly. I guess we all have a little Adrian Monk in us.
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mission accomplished 😀 thanks girl I needed it
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Mucki1991: I'm going to the Local (9 miles away) ACS boutique to check out wigs etc. tomorrow. Says the wigs are "new" but don't know what that means. Also says that if I find one that I like, I can have it for free. As my mind wanders, I'm reminding myself of choosing frames for glasses in the clearance section. I have a few wigs in the shopping cart on a certain website, poised to order one the moment I get home.
And yes, insurance does suck. Mine may be similar to yours. I called them to find out if it was covered and they told me no. But, when I sent an internal email to the SAME company, they said yes. Make up your frickin minds! This website that I may be buying from also has a free insurance receipt with every wig, gotta add it though. Then, I have to get my doctor to write out a prescription and I'll see what happens. Supposedly, I have a $1,000. cap, per insurance year. No pun intended. Another reason they aren't the greatest?... they didn't want to pay for Perjeta (a year's worth) so the prior authorization process took so long that my doctor has held back billing, thank God. Got a letter the other day (after 1st infusion, of course) also sent to my doctor saying that the P/A went through, the day before my first infusion. Even though I called them that day to find out if it went through. Of course, they said NO. Of all days to lose sleep, the night before infusion! Thank you so much you terrible idiots!
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I am angry I hate cancer. I am sad, a special friend of mine isn't doing well and I can't do a damn thing. I can't help in any way, I text we email, talk on the phone. But it's not like being there. I am scared for her. For me. For us all. I am so mad at the word cancer. I hate anything to do with it. I hate all and every treatments, but I still have to try to take them. I hate clinics and smells. I hate my port (aka my third eye) but at the same realize I'll never be without it. Awful thought. First thing I wanted was, my hair back and my port out. And loss of the weight that has packed on from being forced into menopause, and hormonal medicine that would stop a train. I hate looking like I have been beaten since I can't even stand up straight anymore, unless I really think about doing so. I'm always sweating. None of my Clothing fits me anymore. Every part of me looks like a blow fish. I don't even know the Face am staring back at anymore. This is such an evil thing to have to go through! I hate hate it!! ~M~
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Social Security screwed up again. I PERSONALLY went down to their office back in May, with exhaustion letter in my hand so they could bump up my monthly pymt. Was told it should only take 2 cycles. After 3rd cycle, it's still the same 800 bucks. So I marched over there b4 they opened and stood in line. Three hrs later I was told that I should have received an official letter two wks after they got my initial notice of SDI exhaustion back in May. Soooooo, we start the process all over again.
I know better now, so if I don't receive anything in 2 more weeks, I'll have to march over there again.
Who can live on 800 a month in Calif, one of the most expensive states to live in? I'm not in a position to move any time soon, and at this rate, I'll run out of savings. I had expected to work another 11 years when I got ran over by this St 4 Dx, but can't now.
It all stinks. I can't do any of the "fun" things my older retired friends do because we just don't have the money...no cruises, no riverboat trips, no trips to England or Italy. It's all we can do just to make the insurance pymts and pay the bills. I refuse to go out and buy anymore clothes...I just darn my socks and mend my old bras. We still have the mortgage pymts and DD's college loans...she doesn't make enuf $ to pay it all off.
But I guess we're all in the same boat when Hurricane Cancer strikes. Catastrophic illness, that's for sure.
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Never heard of an exhaustion letter. What is that.
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If you worked when you were Dx'd, you can claim STATE disability, but that usually only lasts for a year or less, depending on how many quarters you have worked.
Once all the state funds you can claim have been EXHAUSTED, you get an official letter from SDI, the state, saying you've exhausted the claim. THEN you take the exhaustion letter to the SS office (or mail it in, but you have no assurance that they actually got it). They make and keep a copy, and stamp yours, so you have proof that they got it. After supposedly 2 months, you will then get your full SS disability payment. But obviously that's not what nappened to me. I think just for grins and giggles, I might just make a color copy of my letter and send it via certified mail to the SS entity as well.
It couldn't hurt. All claims are done via one's SS number. I'll just type up a follow-up letter. The security person and I were chatting at the office to pass the time while I was waiting my turn, and he said the Fremont office is really under staffed. My letter may have gotten lost 3 months ago at that office.
Sheesh, that's probably what I should have done back in May, darn it! Trust no govt agency, as they say.
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Ohhhh, I was thinking SSDI and thought there is no exhaustion with that. I think all ss offices are understaffed. Once I submitted the form to apply to SSDI and had a caseworker, a name, I clung to him, faxing my correspondence to him. He was nice and helped me along the process. I hope it'll be resolved for you soon.
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So over the tired thing. I was stuffing a leg of lamb for dinner and was just overcome by a wave of fatigue. Couldn't even stand so just slid to the floor and laid there. My body just felt like a blob of jelly bleh!!
On the plus side DH now knows how to stuff and tie a leg of lamb.
Lita so sorry you have to deal with crap bureaucracy on top of everything else, that can be so draining emotionally and physically.
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BB it is hard when you are relying on people to do their jobs, and you run into so many who don't seem to care. Sometimes it's hard to blame them when their numbers are constantly being slashed by governments to save some money.
Another thing, why do banks and government departments all have their numbers set to "private" when they call.
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BB, I'm not that well-versed with all the ins and outs of SS, but I do know you have to work a minimum # of years.
DH has only worked in public transportation, so he will only get Public Employees Retirement and never SS because he never paid into it.
Hope that helps.
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Hi ladies.. I have some steaming to do today.. sorry for the massive post
So my medical history is ridiculous. In medicine there's a saying that goes "if you hear hoofs, think horses, not zebras".. meaning look for the common things, the typical diseases, the "normal" abnormals. But I am, and have always been a zebra. At 17 while getting a student visa to go study in Canada a doc from the Canadian embassy palpated a thyroid nodule. After lots of inconclusive tests (ultrasound, MRI, biopsies), I ended up in the OR with a partial thyroidectomy. The gland appeared to have calcified, and being young I didn't really do any following up or investigating as to why that had happened. But this, this was just the beginning of what is now my health nightmare.
At 18 I started having seizures. First they happened once in a blue moon, then once a month, then weekly. I got many brain CTs, electroencephalograms, 24hr EEG, and MRIS (and ladies, if you think the breast MRIs are uncomfortable, picture an hour session in the lovely machine with a cage around your head). Firs they thought it was a dilated cistern causing the problems. Then they found a subarachnoid cyst near my cerebellum. Then they found anomalies on the EEG. I went through every possible seizure medication in the market, and nothing helped. 3 years later I was experiencing 6-10 episodes a day. I went through so many specialists until just as mysteriously as these episodes started, they went away. Now I have about 1 a month and they still suck. No diagnosis, no treatment, no nothing. Just more questions.
At 20 I developed horrid abdominal pain. I was just starting vet school and was studying for a test when agony sent me to the ER. Polycystic ovaries. Great.
At 23 I developed a different on and off abdominal pain. Colonoscopy, upper endoscopy, etc... gastro said "oh, probably just gluten intolerance". So I diligently avoided gluten at all costs, but the signs kept getting worse. Fast forward to last year, when the pain became so intolerable I was on the floor and waking up screaming. All the studies were repeated and yet, no answers. "Oh, its just IBS" said another GI. Her lovely PA told me I was an addict because I asked what I could do about the pain. Finally found a FABULOUS GI who was able to diagnose me with atypical small bowel crohn's in December 2016 so that is now under control- but he warned me I will eventually need bowel resection pending how treatment goes. So at least I got an answer.
Around the same time I met with me GP to get a referral to GI I mentioned I had a breast lump. They looked at it and said I was too young to have anything scary (28 at the time). Truly, I didn't like the answer but the GI pain was so intense it kind of made me forget about the breast lump. After my diagnosis I continued with self exams and didn't feel many changes. 4 months ago the mass appeared to have tripled in size overnight. I went to a new gyno and she said oh, it's probably just a plugged duct but for your peace of mind, let's get an US, so I did. Long story short, this is where I am now.
1.1cm mass, firm, hypoechoic, highly vascular, irregular, ill-defined edges. Family history of BC. Biopsy unsure if just ADH or DCIS.
Met with a surgeon who believes there is more going on to the mass than the biopsy shows, so I am waiting on a second path review.
Had my MRI yesterday so probably won't hear anything until late next week. Oh and both my surgeon and gyno are out of town for vacation or conference. So there's that too. The radiologist from last night was perplexed as to why a mammo had not been ordered. I explained all 3 docs that have dealt with my case stated they did not want one because I am too young at 29 and that my breast tissue is too dense. She stared at me like I had three eyes and promptly ordered one.
Meanwhile, my husband keeps going on and on about how everything will be fine and how he is not worried and bla bla bla. I swear I will smack him if he tells me not to be "so concerned" one more time. My family calls at least once a day- so that is one call from EACH member all asking for new information. I keep telling them I will let them know as soon as I have anything. My dad keeps getting upset-- this time because I didn't tell him how long the MRI results would take? Uhm, it was performed at 8pm last night. NO way they will have anything this morning. So he tells me to call the Mayo clinic and that to request for them to will see me immediately - something they should do because they treated my grandfather decades ago...??? No dad, that's not how this works. I know you may say he is just being supportive in his own way, but no. This is a man who was upset because he didn't have hepatitis when his abdomen hurt, and who is very unhappy with my life choices (being a vet instead of a stay at home mom like "he always hoped for").
So... this is it I think.
Anyone who made it through all of that deserves a brownie.. or bottle of wine.
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Dealing with all the administrative crap on top of cancer adds insults to injury. Having worked for the government many years ago, I encourage you to involve your Congressional representatives when you hit a wall. Despite the stereotypical image of a lazy, indifferent government employee, I worked at least 50 hours per week striving to meet prescribed response deadlines and inquiries from Congressional reps received particular attention. (Your results may vary.)
Lyn
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Micmel, you SO hit the nail on the head! Cancer just screws everything up!
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What BosumBlues said, Mystic. I can imagine how stressed you must be as you await your test results. Know that you have a place to vent your anger and frustration.
Lyn
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Thanks Bosum- I am so tired of fighting. Sometimes I just can't muster the strength to get out of bed anymore. Here's hoping for better days ahead for us all
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BB- If you have an IRA or other assets worth I believe 2K or more then you don't qualify for SSI. SSDI doesn't look at assets. It looks at the past 10 years, have you earned 40 credits I believe it was. The longer you wait after your last job if you are disabled, the less credits you will have. This is from my vague memory of going through this 3 years ago. This forum has all the answers, advice and help on SSI/SSDI where the mods are knowledgable at all stages of the process.
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Ha let me tell you a good one with the SSA. To make a long story short, I applied for SSD in January 2013, but put down that my disability started October 2010, once I had the BMX+ recon. When I was approved the judge decided (yes I got to the hearing, of course, three denials) that I was indeed disabled and fully approved me. "fully approved" means that they consider that yes, your disability started at the date you stated it did. Now, (very important) you qualify for Medicare two years after the onset date of your disability. So, because the decision was that I became disabled in October 2010, I already qualified for Medicare at the time I got approved. This was March. 2014. I wait and wait, no payment. In June I go down to the SSA, had to go about 6 times total to solve this issue. My back payment and money were tied up because they said that I had to back pay the SSA for monthly Medicare premiums starting October 2012!!!! I had not even applied for disability at that time and I had another insurance. It took me throwing a big scandal the 7th time I was there to the point that the director came out of his office to see what was going on. My payment got in the bank the next week. Talk about idiocy and bureaucracy.
As for my case worker? She hated me from the first appointment because I had a boyfriend who was younger than me and who was there with me being very concerned and loving, and she tried putting obstacles in my path at every turn. I had to file a complaint and get another case worker.
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mystic you're not alone. Some days I wish I wouldn't wake up. Feeling like this everyday is inhumain. It's a slow torture daily. Every second is felt in every cell of our bodies. It's something horror films are made of. Except we wait for the grim reaper. I can't go a day looking at my family and breaking down knowing I am dying. I feel like I am dying. I feel like somedays I just want to get it over with, instead I have no control. We sit and suffer. We sit and wait. We sit and are scared. We wait for the next scan while our insides churn with fear and the unknown of what we are really dealing with. Our bodies are killing us slowly. Or even not so slowly. I can't eat a damn thing two weeks out of the3 I am on this medicine. My tongue feels hardboiled and I can't do anything i want like I used to. I am a shell of what I was and the longer I go through this hell the more I would rather just swallow my bottle of pills. Good people around me are dying and I am sick of living this cancer. Because that's what we do. We live the cancer. It's the only thing we are left with. When the bus that just hit us leaves the scene. I've had enough. No wonder people don't make it through this evil cancer life. So done, so over it! ~M~
Lumpie~ thank you for reading my rant. There are some wonderful people here, I pray we all have the strength to carry on. Somehow. Day to day is I can offer anymore. Such a shit stew.
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Mic,
I know exactly what you mean. My husband was so upset I didn't want to go on a trip this weekend and visit his family. I'm sorry, I can barely deal with myself at this time. I love his family, they are really fabulous people. But I can't. I just can't. I have to force myself to eat so I can take my crohn's meds and it's like force feeding. I don't know how much more of this I can tolerate. Sure, physically we can cut and replace and "fix" the diseases, but not so much to your mental well being.
I really hope you have some better days in the near future
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Re travel: Cancer/chemo "stole" my birthday trip to see my nephews/bro/sis-in-law and I still feel robbed a year and a half later. You don't get those back. The whole thing is way too much like being robbed at gun-point by a criminal who can never be brought to justice.
Thx for the rants above about (temporary?) disabled DMV placards. I have wondered if there will come a time when I need that. As a nurse, I have helped complete this paperwork for patients in Virginia. I generally complete it and the doctor signs. From the healthcare side of things, the paperwork doesn't seem too bad in Virginia.... but I am not the one who has to take it to the DMV and try to actually get the placard, either.
illimae, my employer specifically left cranial prosthesis out of the policy too! I thought that was pretty chintzy. I *LOVE* that you went to work bald and and advocated for a change to the policy!! Maybe I'll muster the courage to do that!! You have inspired me!
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