CRAZY TOWN WAITING ROOM - TESTS coming up? All Stages Welcome.
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Yes, Flexeril. $80 a month. Will check it out on GoodRX.
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My BELOVED Crazies
I am so far behind and please know I think of you all every day.
Katy have my arms wrapped around you for tomorrow. On all levels.
Shorfi- glad no Mets, sorry for the challenge of managing pain
Bonski welcome
Slow I see you just circled back. I hope everyone is on the mend in your house.
Ducky- the good the bad and the ugly of the house selling.... and the process around it.
Octo- gosh did you decide about your step mom? and now how are you handling helping out with the grandkids/school shut down?
Rain YAY rads almost over!
DF that is simply F'd up re the medical bed. have I mentioned how much I HATE WESTERN MEDICINE AND INSURANCE frauds.
Sula- how are you.... holidays and then your last H soon. YAY for you
Tom the story about your back 'going' when you were doing the installation. Scary.
Actually lot's of you have had scary falls... had one too 3 years ago- sure that contributed to some of the things they noted on my scans. That and over 20 years of putting my leg behind my head and other yoga 'things'
Cubbie sorry if I missed this but are you a teacher? you seem to have lots of involvement with the school.
Popy I would probably want to wait to, unless somewhere inside of me I was really scared then I would probably rush to find out. If you aren't secretly scared then that's a good sign
Egg- how were rads.... I would want them to look more closely at my breast if it was red....
Chi- Italy and food. Just delightful
I haven't been AWOL from CT just from posting. I think around Thanksgiving I started to become a little overwhelmed with, well life. Not in a dire way, but ugh, not sure how to explain. I HAD been feeling really good and steady on all fronts, mental, emotional and physical. Went for H infusion the Monday before Thanksgiving. In Fact that morning I was really feeling at ease and well. Then the entire appointment at the MO office was OFF KILTER. MAJOR the whole energy there, my interaction with a male nirse ( who I actually think is bully) and the NP ( whom I really like, historically). The whole morning was bonkers. Completely threw me into my shell and headspace of 'THIS IS WHY I NEVER FUCKING TRUSTED WESTERN MEDICINE TO HEAL'. The details are irrelevant, but my circuits got toatally jammed from that appointment. Actually considered FIRING them. MO ( who was out of town that day) called me right after Thanksgiving and I said we need to regroup around how we approach me and my 'case'.... he heard me, so I felt better. But I guess not fully better/at ease. My anxiety ratcheted up before this last appointment. UGH anyway just something I'm working on. Re wedding- still not certain on venue... will keep you posted.
xo
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I looked it up. Appears the generic is not expensive. Wonder why my script was big bucks. Family doctors don't want to prescribe it. Tomorrow at Tara.
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Cyclobenzaprine (generic flexeril) is good, but even cheaper (and more effective for me) is diazepam (generic Valium). I get the 10 mg, and cut them in half.
When my mom (z'l) had spinal stenosis, at first they wouldn't let her take anything stronger than arthritis Tylenol because of her COPD. Then when she went on home hospice, they prescribed generic Vicoprofen (hydrocodone and ibuprofen), and it worked like a charm. (She lived two months after they kicked her off hospice because she didn't die w/in 6 mos.).
The cruise is wonderful--the Viking Star is amazing in all respects--just the right size for an ocean liner. Today we toured Taormina, Sicily. Enjoyed all the stuff I used to eat growing up in Brooklyn with a landlady from Catania--best arancini since hers, amazing, hand-stuffed cannoli. Alas, I put the bag down so I could get a good pic of Mt. Etna--and when I turned around, a feral kitten (so cute it almost made my head explode) had stuck his head inside and was happily licking one of them (smart kitty--he knew to leave the chocolate chips, which are toxic to cats). When I got back to the ship, I had to cut off and flush that half of the cannolo down the loo. The remainder was the BEST cannolo I've ever had--and I've had pastries from Ferrara in NYC's Little Italy and Chicago's Oakley Ave., Taylor St. and Elmwood Park Italian bakeries.
Speaking of Taormina: hadn't realized I was in danger of lymphedema at only a mile high--because there was no pressurized airplane cabin. Felt my bicep tighten as we got into the bus to descend to the Autostrada, but it eased once we hit sea level. To be safe, will keep my LE sleeve & gauntlet in my purse, just in case, for tomorrow's all-day trip to Monreale & Palermo (we will put in at Trapani).Noticing female passengers with very short hair, though haven't seen any other Medic-Alert jewelry besides my bracelet. Hmmmm....
Got back to my stateroom, pulled off my Ugly-American sneakers (Hoka One-One Conquest--make cobblestones feel like carpet) and hiking socks and nearly fainted--I have a blister BENEATH my bunion callus. Oy. Hope that Compeed bandage holds up through my shower!
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Arancini! Cannoli! You are talking my language ChiSandy! If you send me some I promise to share my half via the tubes with Katy! Honestly, arancini are the best comfort food ever! (but I need the tubes too: no such thing in my small town...hmm...trip to San Francisco may be in order to satisfy my craving...) Hope you continue to have a great time! Edited to add: other than blisters, that is: perhaps your signature line is a bit too prophetic!
Gaia:I had one of those days at the MO yesterday too, and I totally get how it increases the anxiety, especially when you already have the complexities you are dealing with...I am glad you let MO know how you are feeling....and let me know if you want me to bop the bully nurse in the head! That is what bouncers are for!!!! I have a bit more energy, as fortunately, I was able to say no to stepmom coming and the grandkids are back in school...though they are coming to visit me next week, which will be a blessing! Love you girl!
Hugs to all!
Octogirl
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ChiSandy, enjoying your stories and your food adventures.Yes, hydrocodone and ibuprofen can help. I cannot take oral narcotics now without extreme medical oversight l due to another medine I took.
Xanax helps with the muscle and tendon pain, but I keep my intake level as low as possible.
It has been one of those days. I have to clean up Anne's room and take the big pile of clothes off the medical bed to get ready for tomorrow
Happy trails to you.
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Oh my, Day 2 of Radiation! I marched on up to the radiation doc, third day in a row, third doctor in a row, third day of pulling out my pink boob and saying "What is this?!" But today I made it clear I wasn't leaving until I had something more specific than "It could be anything. But it's not an infection." As soon as this radiation doc came in the room, and I showed her, five seconds after examining me she knew what it was and I felt my confidence come back. She said it's stopped-up fluid, lymphedema, the blood is pooling at the lowest part of my breast and piling up. Once I am done with radiation she said I would go to a lymphedma PT and have lymphatic drainage massage. So this really is my new normal.
All the extra time it took at the doc's made me late for my webex with my client. I was already double-booked taking my brother to the psychiatrist (mosaic down syndrome with psychosis, a handful I tell you!). I called his neighbor and offered her $50 to take him but her car wouldn't start! So I raced on up there while "attending" the webex by phone, and delivered him 20 minutes late for his social worker appointment, or I could look on the bright side and say it was 10 minutes early for his psychiatrist appointment. Then we went and got his meds, some lunch and a lovely Starbucks coffee and raced back to his neighbor to take her to the nursing home where she had a major decision appointment for her husband, you know, since her car wouldn't start.
I'm late on two writing projects and a third one due on Monday. I got a prescription for Atavan! Just now feeling like I won't need to take it, but it's good to know it is there. So just sitting here at the waiting room of the nursing home expecting the woman to come out sobbing any time... once I take her home I'm going to just collapse in a fit of laughter . . . or something . . .
Got my lovely $$ for the magnets dear Octo and your nice supportive note. Gave me a lot of motivation to pay your kindness forward on these boards one day.
So awesome to have my virtual friends who understand high anxiety and how it can just blow sky high from time to time.
xxxooo
April
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eggroll, your life sounds familiar. I am too tired to elaborate, but I get it.
I worked as a professional writer in D.C for years for all kinds of organizations.
Still am a writer, but working on my own stuff. A co-writer asked me yesterday if I wanted to rework a novel. It started out as a memoir. We have been kicking this manuscript around for 15 years. I can't work due to chronic pain and am on disability. So, gotta turn down the work.
I have chronic, generalized anxiety. It is made worse because I have real reasons to be anxious. Glad you have meds for when you need them.
Glad you are here. Nobody should go through this stuff alone.
Hope you find some minutes of peace in the chaos.
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Eggroll. I think you need to keep asking. Lymphedema is not red, or pink. I am also pretty sure that it doesn't pool up at the bottom. The fluid that pools is interstitial, meaning, it is in the tissue, but it is lymph, a fluid that normal goes on about its job as part of your immune system. If you press on it, it would take a while for the dent to leave. And waiting a month or more during rads could only make it worse if it was lymphedema! I have read whole books on this subject... I am so sorry, my intent is not to worry you, but I would quick take a picture of it, before they say it's FROM rads, and show it to even more doctors! That is not the right answer, and lymphedema can get pretty bad if it is allowed to. Crap. crappitty crap crap crap.
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EggRoll.......Tomboy is right............I have LE...my arm is neither red or pink...........as I said go to Lymphedema on Google......you iwill get the entire story of LE...............it is a swelling, sometimes minor sometimes major................you get fluid that pools, but not in one place...............when my arm swells......the entire arm swells.......but it never changes color.......Most Dr.s not "jack shit" about LE...................I had to tell my people I thought I had it.....
WHY......because I read up on it before I even had surgery........so I was well aware of what could happen..........and sure enough it did...........maybe you should seek out an Infectious Disease Dr.................just a suggestion....since no one else seems to know what it is.......at least he will tell you if it is an infection.0 -
Decision, can't the doctor fix the wording issue so your mother doesn't have to give up her hospital bed?
Gaia, I do work for a school district, but I'm not a teacher. I'm a computer person, and I also do sound and lighting for drama and music programs. This is my busiest time of the year!
Eggroll, I don't know what is causing your pinkness, but I'm wondering if you can get into see your MO or BS? I'm not sure your GP or RO are the right people to be evaluating this.
I had my first radiation treatment today. So far the biggest issue (aside from the fact that the place is freezing) is scheduling. They are so busy there, I just have to work in whenever they have an opening. I'm hoping that as other people finish, I can get first dibs on a regular time.
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I was so fortunate with my Rads team, and the time I had with them.....I did 38 treatments, and did not miss a beat throughout the entire experience........when I first started they said "do you like morning or afternoon".......said I am a morning person..............the next question was.....what time would you li;ke to come in we have .........and read a list of times........I said "9am is good).........that was my time, and no one else could be put in that slot.........I was in and out in less then 1/2 hour including getting changed...............Maybe being at a Regional cancer Center makes the difference........and actually my RO Doctor was the one I mentioned my LE suspicion to, and she made the appt. with the LE person right then and there.......and it was all done in the same hospital............all my Dr.s were in one place......same building, same hospital...............
Lucky me for parking they even had Valet service.............
I went to the Regional cancer Center of Fox Chase Cancer Hospital in Philadelphia......it was located in Drexel Hill, just 15 minutes from my house.....less if I got every light green........0 -
Just a quick Hi.. I have had my grand -babies sleeping over last 3 nights.. They are going home tomorrow, so.after that I will be back to catch up.. I'm also feeling overwhelmed with Christmas looming so close now, and everyone coming here for the day. Feel like I am quickly running out of time !
Hugs to all xx
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Yikes! We ARE running out of time, and YEAR!!!
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Cubbie, 2015,
Medicare does not allow the equipment supply company to go back to the doctor for corrected paperwork. They make the problem impossible to fix. And when my Mom goes and asks her family doctor to write new orders he has to go to a different medical supply company. That ensures that the original medical supply company cannot confer with the first doctor and help him get the order correctly worded.
I was inclined not to bother to appeal Medicare's decision, but I feel like being a pain in the ass and pushing back. The medical supply company said not to bother with an appeal because I will lose.
I wrote an email to the local TV station with the title, Medical Bed Seizure from 85 Year Old Cancer Patient, but did not send it. My brother went ballistic and said having TV crews filming the equipment supply company would subject my mother to shame and humiliation. I can't afford to alienate my brother because life has taken away most of my friends, and I don't want to give him any reason to play vicious family politics. My brother has gone off the deep end twice since losing one third of his foot to a diabetic foot infection. He becomes like a mad dog.
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Oh dear goodness... this totally sucks. Maybe I made an assumption wrong. Here is what she told me as I remember it:
"The scar tissue in your breast is blocking the vessels and the blood is pooling at the lowest point. After radiation you should go to a lymphedema therapist and they will teach you to do lymphatic massage. I've seen this many times."
My breast is not bright red, it's a pale pink, but it is definitely swelling now, starting to get those big pores going around the nipple area. I wish I could have a good cry. How do you go to yet another doctor and not have them think you are a problem patient? Just keep going I guess? Maybe this nurse navigator I have never yet gotten to meet can help me. Now that I've started radiation I probably can't go back...yes, that's why I was freaking out. Once radiation effects start in they'll just say it's the radiation. What awful timing all around. I will reach out to the LE Physical Therapist and see if I can get her to see me.
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DF, I just can't believe how expensive meds can be. I'm glad the generic isn't too bad. It is shameful they are taking your mom's hospital bed away.
Gaia, I'm glad you felt heard by your MO. It's good to see you!!! You go Octo!! Don't let that nurse bully our Gaia. We are so lucky to have a Crazy Town bouncer! I hope you're able to find some peace with your treatment. Gentle hugs to you.
Chi, Sounds like you're having a wonderful time. I hope you post some pictures! Arancini and Cannoli - making my mouth water.
Octo, Hope you enjoy your time with the grands!!
Cubbie, One day down! YAY. You may want to ask them if they have warm blankets. I hope you're able to get a better timeslot soon.
Ducky, It's nice to hear a positive rad story. Before I did rads I was so nervous reading all the bad things. Then one of the ladies started a thread about good rad experiences. I can't tell you how much comfort I got from that thread. I also had a good experience - other than the two hour round trip drive.
Lucy, I know that feeling and I'm not even hosting Christmas. I woke up this morning and realized it's only a week away!! Deep breaths!!!
Tomboy, YES! We ARE running out of time. Tick tock.
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Eggroll, those enlarged pores REALLY REALLY need to be looked at. You can refuse to do rads until they have a breast specialist or BREAST SURGEON evaluate your breast. Inflammatory breast cancer has been known to be subtle, too. The orange peel skin around the nip is what is worrisome to me too now, you didn't mention that before, or I missed it. Are you going to a major treatment center? If it was me, I would refuse rads until someone that really knows, sees you. Also, someone who will put it down on paper, denying that it is anything. If they are not willing to generate a clinic note saying that, then I might insist on a biopsy of the skin. I am sorry you are having this happen, it may be nothing, but they need to know for absolute certain, that it IS nothing.
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eggroll, on November 12, 2015, I was saying outloud to my new breast cancer treatment team that maybe I was being too obsessive about an aspect of my care. This was a first rate breast care team at a comprehensive cancer care treatment center that I traveled 250 miles to meet with after I realized I was not going to get the best care possible in the mid-sized Southern town where I live. I had delayed a second surgery after the surgeon in this cow town where I live had neglected to communicate directly with me what he planned to do in the second surgery and why, and I had contacted Dr Laura Esserman to ask her to find a great team for me. And, she did. The surgical oncologist that leads this team moved her chair close to me as I was being apologetic. She got in my face, this well known surgeon did, and she said, "No, you have to talk about your concerns. You have to be your own best advocate."
Tomboy is right. You need to consult with an expert who is certain about your breast problem. The rads can wait. You have to be your own best advocate. Don't worry about being a problem patient. You absolutely have the right to get a second or third or fourth opinion. Do not settle for anything less than absolute certainty about your condition.
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Thanks, Tomboy. I wouldn't call it orange peel at this point. Just getting a little stretched from the fullness. Maybe they aren't pores. Those weird holes circling the areola, stretched out and nipple is just filling out. Swelling. I'll sleep on it tonight, my husband didn't get the Atavan Rx filled. Maybe I'll have a glass of wine...use all this adrenaline to get some work done tonight. I'm so behind. I guess I should just pack my crap up and go to Seattle Cancer Care Alliance as I have been advised in the past and go get a second opinion. I do get the sense people are in CYA mode. I think I should get a diagnosis in writing. It sucks our doctors have to worry about lawsuits so much they don't talk straight to you. I even overheard the nurse down the hall telling the doctor saying "she's not going to give up." I don't know if she was talking about me or not...
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Hey DecisionFreak, I try to reply to posts it seems to always go to someone else's post. Very cool you are a writer. There seem to be a few of us in here. When I came out of anesthesia from my last surgery I had a really clear vision of churning out children's books. I hope that I can get in a place very soon where I'm able to make that come true. But for now I make my living writing fundraising newsletters for charities. Almost 20 years of deadlines, averaging 3 a week. Oy!
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Decision, I would appeal anyway. I'm sure the medical supply company sees a lot of Medicare orders, but they're still not an authority on the subject of what Medicare actually will and won't do. It worth a shot, I think.
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Gaia, glad you're back and posting. You've heard me on this subject before, but your MO sounds like a mensch. Maybe not all of the staff, though.
Thinking of you today, Katy!
Eggroll, I agree with the others that you need to get this seen to. I will say that if it is LE, a good therapist can make a difference. Mine does. Wish I didn't have to see her, but she is a very positive light on the cancer journey and knows what she's about!
Glad you had the grandbabies, Lucy! The best distraction of all!
Three more rads treatments, counting today. It can't end soon enough for me. They're giving me a heavy dosage, and I'm going to the wound care specialists after every treatment. Yucky. Is all I can say.
I'll add a positive note, though it doesn't start out that way. Yesterday it rained heavily, and the subways were a mess. So I was late to radiation but it didn't matter because they were already 45 minutes behind schedule and I didn't get in for an hour. The waiting room was jam-packed, so I'm sure the other machines were running late, too. I spent much of that time listening to a woman ream out people on the phone: insurance, dr.'s office, you name it. In between calls she complained to the woman who was with her about the general incompetence (she used stronger language) of whomever she was dealing with. Gradually, I realized she must have very advanced cancer of some sort, was on a clinical trial, and things weren't looking good. So she was trying to control some part of a bad situation that was largely out of her control. For some reason, the experience got me thinking about the supportive environment here and the way we crazies are able to ratchet one another's anxiety level down, so we're not as hard on others as we might be otherwise. I don't think this woman was Mother Theresa when she was healthy. But I also don't think that she had the kind of support in her life that might have made her be a little more pleasant to people who were undoubtedly trying to help her. Does that make sense?
Hope all crazies, wherever you are, are having a good day full of delicious food and the people you want to have around you!
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Good Morning Crazies,
Thinking about you this morning Katy. We are all right there in your pocket. SqUeEzE!!!
Today I'm actually leaving the house. Big event!! I'm getting my hair cut and colored. I've got a lovely gray streak in the middle of my head and I'm looking skunkish. Wishing you all a pain free day!!
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Just realized last night that next Thursday is xmas eve........I guess I just don't give a crap anymore and it has caught up to me.........Tired of worrying, tired of thinking, just tired of life in general........and the sad part if "I don't really care"........not a decoration up, no tree, nothing.........down in the basement, door is closed and locked, and I'm tired of everything...........love and hugs to all of you......
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After work I am going to get my hair cut and colored too. You ladies have a great day!!!
Katy...thing about you...
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Katy, adding my hugs and good thoughts to all the others!
Octogirl
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Ouch, I have good teeth for my age but dentists at a big medical school told me years ago that I needed bone and tissue grafts. I was not able to get this work done at the time. I saw my dentist today, and he says I need a full evaluation before going on drugs to protect against bone loss from AIs. The problems with jaw disintegration from these bone building drugs occur in people who have dental problems.
So, crazies, in order to get my teeth and gums in great shape, I may need flap surgery on my gums plus bone and tissue grafts. I look okay now, but my mouth will look great if I go ahead and do this work. It will be back to the big teaching hospital for this very difficult dental work. My dentist agreed with me that the cost would be out of sight in this rinky dinko town where I live, but affordable at the dental school at the hospital where I am receiving my cancer treatment.
More money, crazies. I am on a limited income. Even with transportation and accommodation costs at the dental school/teaching hospital, the dental work and related expenses will be a fraction of what I could never afford to pay in this town.
I most likely need the dental work. If I have it, I will most likely keep my natural teeth for the duration.
I am wondering if I will be able to keep my house with all of these medical expenses. I can pay the bills now, but the homeowners insurance may outpace my ability to keep up.
Do you think the Social Security Administration would regard begging on the street with a tin can as work?
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I'm sorry DF. Life can be so very difficult sometimes. I just don't get it most of the time.
Ducky, Sending you a PM.
Shorfi, Hope your hair comes out great!
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Dear Crazies- just a quick check in. Just got home from a very long day and resting now.
The doc was pleased with her handiwork and it isexpected I'll get 20/20 technicolor vision in the right eye.
For now celebrating the upcoming break of several weeks from sticking, poking and prodding.
Thanks for ahh the love, hugs, and support.
K
🎪🎪🎪
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