STFU (Shut the F*** UP)
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Sending you healing thoughts GD ❤
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Hoping that tomorrow goes well for you Granny Dukes!
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Granny... Prayers and hugs for you! Let us know how you're doing
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Granny in your pocket hugs
Cami &B46 hugs. B46 Happy fairy dust and clapping hands
Shell I'll try "right diagnosis .com" Whew. A 10 question test BUMMER, Doesn't leave any margin for error!
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Granny hugs---
Sas u ever sleep?? LOL I have trouble stil not as often but more drugs help I didn't take all last night--I always try, but never works.
Sheila when u first came on I knew u woud add so much to this group and u'r so caring about eveyone who needs some hugs and direction with so many questions about alot of things Im so happy to see u here.
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Shell rightdx.com almost worked , but DR.Google better =====Neurofibromatosis type1? Good lord. Knew one woman with the lesions(?) all over her body years&years ago. From a self preception standpoint it'd be pretty hard to live with. Have seen the Cafe-au-lait signs before , but never bothered to learn what they meant. Thank you, new learned thingy for the day
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Okay, Shell.... heres one.
Okay, now that I got that cleared up.....Yes, Granny's day of horror is upon us. I would be so afraid.... but don't tell her. It's just easier to try and make light of some things, than face them head on... or b___s up. I THINK that's a saying.
Sassy, I got to thinking, that just MAYbe some of our problems are started when we are younger. And as we get older, our systems change, and maybe something sets of a cycle of illness or problems.... Like with my hands! I also think it is possible that the longer I use medicated creams, like with cortisone in them, etc. that causes your natural barrier on your skin to be lost.
Like with one of my fingers, and my yellowish nail! The creams and hydrating and gloves have caused a nail-fungus...I think.... and it hurts!.... So I asked Dr. Google about it... Way too many expensive drugs for that.... I happened to think of white vinegar... In just ONE day, of dabbing on white vinegar, it is almost gone.
So I'm just going to try vaseline... nothing else.... and the problem nail is to stay dry, and use white vinegar dabs. Gloves still, but not on THAT finger. Does that sound like a plan?
I USED to have Stasis Dermatitis on one leg... THAT condition will drive a normal person nuts. The itch/scratch cycle just makes it worse. After dermatologists, allergists, and many creams & compression stockings, it somehow ran it's course, and is gone. Took about 7 years.
Okay.... so thanks again Sas....
I'll be thinking of you little Princess... I wonder who is going WITH her? Or staying with that little fire-cracker? I wish I could be with her...
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Chevy I know we're all concerned about Granny--all this crap is BS, I know we're older but it seems like everything started that day we heard that horribe word.
Wait VINIGAR wow didn't think of that, I'm going to try that on my toenails, well it won't hoit. U know I like u'r theories not bad. My ad used to use ribbing alcohol every morning all over and his feet too. We thought he was crazy as usual. but thinking back his skin was so smooth and soft and his feet were geat even at 96--Hmmmm I wonder.
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Camille, my finger was really hurting, for the last 2 months... But I used straight vinegar on a Q-tip, and dabbed it on 3 times, and it was better this morning! Maybe it WILL work!
I also mixed a solution of white vinegar, alcohol and water, for my dogs dry, flaky ear! It's better also. Pretty soon I won't ever have to go to the Vets or the Doctor... I can just read Dr. Google, and listen to Sassy.... Ha!
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Chevy seriously I'm trying it. I t sounds good to me-I always liked vinigar--always said u can clean with it, eat it, douche with it--it was always such a useful product so why not.
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Camille.... wait I just edited my last one! YES!!! I DID used to rinse out....
Okay, don't ever try THIS one.... My Doc told me to use a vinegar rinse for this yeast infection from hell... So I DID.... Put about a cup of vinegar into that rubber hot water bottle with a little water.... hung it up, rinsed out, and before you knew it I was on FIRE!!! So I tromped back to the good old doctor, he took one look and asked "What HAPPened???" I said Well you told me to rinse with vinegar!!! He said didn't you hear the 2 T of vinegar to the water????
So he painted me with that "purple" stuff... And then I walked like I had just gotten off of a draft-horse. I told DH "Now I have a pickled, purple p***y." It was not fun...
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Chevy and Cami==You'll make my head blow up LOL. I'm just a learning sponge that has sucked up allot and regrettfully/advantageously seen allot. Then being that way WITH access to the computer, it's like having the biggest library in the world in our homes. Just a conduit. There has been much written about repeated exposer to "stuff" causes the body to go Kaflooey i.e. Immune system dysfunction, which presents in sooooooo many different ways. The vinegar thing has been around for decades, may be centuries, may be milleniums. AH a good question for DR Google? When used by docs as it often is & has been for many things, particularly for finger and toe fungus and non healing wounds, they use the chemical name-"Acetic Acid". There is another treatment for nail fungus that I haven't tried, but always giggled at the thought of how it looked,,,,,, Make a hole in a lemon(again it's the acidic nature of lemons) and stick the toe/finger in it. Very funny visual thought. Chevy Dr Google "Swimmers Ear"(which is most commonly a fungus). You will be pleased to read, that you came to your treatment by deduction, of a very old treatment. Also, your observation of your hands is so much on mark.
AS much as we hate HIV/AIDS, it opened the research up into immunology--the study of the immune system. The explosion of knowledge from this can't be measured. Then second or equal is the sequencing of the human GENOME with the extension of being able to identify genetic abnormalities. Just wish our Government(USA CONGRESS) hadn't given patening rights re: findings in both research areas. Now it's a Pandora's box thing trying to recind those rights. The government did it initially to spur research, but now the prohibitive costs of testing to get to a diagnosis is awful. Think cost of BRACA1&2/Oncotype score. STFU.
Vinegars first written usages go back 5000BC--DR. Google
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Thank you Sassy.... Sometimes when I just THINK about something, and try and figure out why it happened, and WHAT I can do about it, I can come up with something else to try. I have come to the conclusion, that I am keeping this ongoing fight with my eczema going, by over-using the cortisone which I was prescribed. I think I built up an immunity to it.... and maybe it destroyed the natural barrier on my skin.
What did they used to do in the "old days?" Like my Grandma used Turpentine, and yes vinegar.... Also used to tape a piece of bacon over an infected sore, or piece of metal stuck in my grandpa's skin. And Mentholatum was used for EVERYthing. I even used it on my hands, because the cooling helped the itching and burning.
So I'm just trying alternative, natural ideas now.... You gave me the incentive to really THINK about it.... Thank you!
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OMG you people, it's 3 am over here, dog woke me up, now I'm laughing so hard I can't get back to sleep. Honestly Cami and Chevy - you two are like ping pong balls, who needs entertainment when they have you two. A pickled, purple......What the heck are you people taking?!!!! And Sas - that question was one I got right! How did you get the answer so fast? What did you google? I studied 8 hrs a day every day for that test. It was a question on infant hypotonia I got wrong.
Honestly, you people are the best entertainment one could ever ask for. Just LOVE the normal quote Chevygirl, you people are just priceless!! Ok, now back to sleep. Thank you!
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Praying for you this morning Granny!! It will be ok and we will be here for you!
Shellshine - YOu are awesome!!! Keep it going!
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I just want to interject here with cleaning the partials...I came in a little late in the conversation but don't use comet too caustic...you should brush them but you can use dish detergent not toothpaste. You can also soak them in polident but you only need to do that for 15 minutes. Also, you should try to keep them out overnight but if you can't try at least 4 hours and if that is still difficult take it out during showers, etc. Your tissue needs to breathe. Keeping it in can cause sores and tissue changes. If you are in treatment and getting any mouth infections..you can soak the partial in magic mouthwash or nystatin for a little while. I heard someone was doing their homecare for their mouth but their partial was re-infecting them so this prevented it.
I hope I didn't offend anyone....just trying to help....my field of work
Rachel
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Oh Good Lord Rachel! I just KNEW you were in the business.... Ha! Why didn't anyone tell me this stuff? I haven't had any problems in almost 27 years.... When I take them out, it is for cleaning... and then I whip them back in before anyone can see me.... not even the dog.
I think if I take them out at night, I will either lose them, or my mouth will shrink like a prune, and my face will cave in.
Okay I'll take my plate out when I shower.... and put a towel over the mirror.... and then brush them with a wire brush and Oxyclean.... Ha, ha!
My mouth is the ONLY place I have not had trouble with....
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Had to repost this from Bonfires- it's very irreverent and that's not my strong suit, so.......
Granny when you go to the reunion, you could put some erratic makeup on and have some fun on the bus, Smile widely at passerby's, a strange hat, an old coat that you could rip a couple of places, a boa, and a cup on your walker ........ then see how people react----will they avoid sitting by you, will they drop some money in the cup LOL. It may even pay for the bus ticket. TODAY'S D DAY--In your pocket, and teeth into the fire.
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Shell, Dr Google keywords "cafe-au-lait, freckles, and nodules" Brought NF right up with type 1,2,3. Cafe-au-lait by itself brought up oodles of pics, oh so sad for the worst cases. Hypotonia first thought-- Kernicterus? What was the answer?
Chevy, Oh yes, your comment on walking after the painting and vinegar. Priceless!!!! Reminds me of a story from Readers Digest. [[[[A women rushes home and showers, sprays--feminine deodrant spray, then off to her GYN exam appointment. Her doc, a male, says during the exam "You didn't have to get so dressed up for me". She wonders all the way home what did he mean. Once home she notices that it wasn't her feminine deodorant spray that she used, but her daughters---SPARKLE SPRAY]]]]].
Welcome Rachael happy to have you here
Sassy
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Chabba--working on calling Tamox's manufacturer. Result: MYLAN doesn't have any research b/c they are producing the generic--FDA doesn't require them too. AstraZeneca is out of the production of the drug, therefore, doesn't give support--Also, within FDA rules. AZ directed me to www.dailymed.org. This link will pull all drug package inserts. Good to put in favorite places on home computer. Regular package inserts need a strong magnifer to read.
BTW the soaks are within range of minimum treatment, and the foot doppler is the minimum to determine flow. But, always a but right.? The bigger picture needs that have to be considered are 1. History(hx)-inclusive of age, smoking, and Tamox use --all other hx important but the three are definitive to your situation 2. minimum testing should include cardiovascular vessel angiogram and doppler to minimum the groin for arterial and venous vessels respectively.( Shell will pop in when she wakes up). 3. upon completion of hx and testing the major things to consider are treatment for vascular occlusive disease if present---because there was a pedal(foot) pulse audible with the doppler(Machine they put on top of your foot and at achilles) doesn't exclude disease above that point. Just means there is flow. Because the little toe is necrotic even if the origin appears related to pressure applied by your socks b/c the toe had no feeling b/c of neuropathy, vascular flow above that point may be heavily dependent upon collateral circulation that may or may not be strong enough to promote future extremity health without someother treatment. The treatment range is another discussion which would muddy the waters now. Also, someone, preferrably your team of docs versus individual doc, has to take the responsibility of determining your risk of continuing Tamoxifen. The problems with this discussion are multifaceted and would be lengthy at this point. This decision can't be addressed until a complete testing is done. Sorry, I'm treading on the podiatrists toes, no pun meant as this is very seriously presented. AN Interventional Cardiologist referral should be obtained asap. This type of doc is the definitive for the testing indicated.
Shell nursing consultation, please, re:above. For chabba and anyonelse reading this, I've asked Shell to evaluate what I've written. Shell will identify 1. if my statements are correct 2. if my statements overstate the problem. 3. if there are any diagnostic modalities not mentioned 4. If the Interventional Cardiologist is the correct highest level of care appropriate to the situation.Sassy
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PPP......I will never forget! Thanks for a good laugh this morning.
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I'm in your pocket GD!
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Sassy.... At the time I stopped Tamoxifen Citrate (Watson Laboratories) I sent a lot of reports about my problem... I sent them not only my notes, and what I had found, I even sent them a few pills for them to analyze.
They THEN reported this to TEVA.... THEY wanted the numbers to my physician and my Oncologist. I Sent them everything. I still have not heard back. These are the companies, that make the generic form of Tamoxifen.... They, of course, were wanting to prove that my over-night hearing loss could not POSSIBLY be from the Tamoxifen.... and my Docs had their heads up their you know what, and of course would NOT be brought into the fray.
I have had my hearing aids for over 2 years.... So in other words it has been reported, but probably still no change in labeling, or warnings from them nor the FDA.
I will just always believe that ANYthing can happen from any drug we take. I understand they can't possibly know WHAT will happen to us.... or whether the risk is greater than the reward....As in the case of Tamoxifen, how does anyone really KNOW for sure? Women DO get cancer even while ON Tamoxifen.... maybe it was there before, but it wasn't worth the risk for me to keep taking it....
Beatmon! Yes.... It was kind of funny.... Every pair of my panties was purple for awhile.... rather pretty!
I could barely MOVE, but it gradually got better.... 0 -
I know all meds have side effects. I think both of my meds I take now causes " breathing problems". I don't know if it was the abraxane or the zometa that made me wake up the first night forgetting how to breathe. It was scary. Now I get steroids and benedryl to combat that.
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Geez Veggy! I'm sorry.... It's like we need to take something for whatever is wrong with us, or treat us, and then we have to take something else to counteract those SE's! I did that with Antibiotics and Prednisone, for Asthma... plus breathing treatments. THEN I had to finally stop it all, because of the awful sores in my mouth.... "thrush" from the treatments.
I thought I had "sand" in my throat.... and then I looked, and my whole mouth was covered with "stuff."... So much for not following the directions for rinsing your mouth after those treatments. Now, I just rinse with Pepsi.... much better!
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Dear chabba (and sas), you should have a complete venous doppler by a certified lab, and certified vascular sonographer AND a vascular surgeon consult to precisely diagnose and guide you. Even though their title includes the word "surgeon," they medically manage circulation problems, that's their specialty.
Non-invasive ways to measure blood flow are:
1. Groin, knee, ankle and foot pulses to estimate arterial blood flow (from heart to foot). If the pulses are strong on both sides, it is a good sign about flow above the pulses. When the pulses become unequal or diminished, the blockage is likely between the good pulse and the poor one.
2. Ankle brachial index (blood pressures) is another way to check arterial flow.
3. sas is right on about the tamoxifen - in those who have risk factors, it can increase the risk of blood clots. Because I have a blood clotting disorder, I was advised by my hematologist/oncologist not to take it. Tamoxifen helps prevent cancer from recurring in some women, so don't stop taking it to prevent blood clots if you don't have risk factors!!!
Venous insufficiency is different than arterial disease. It means blood pools in the extremities and has a harder time getting back up to the heart. I can't diagnose that you have it, chabba, but it could be the reason youhave the necrosis. You may or may not need to lose your toe, but whatever the outcome you need to have a complete evaluation to diagnose and treat the whole problem. Some of the treatments your clinician may recommend include compression stockings, elevating feet above heart when you are sleeping, weight loss, proper shoe selection, and medication. Smoking makes it much much worse, but you don't smoke so you're good there.
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you mean you had Pickled Purple Panties, right Chev?
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Shellshine morning sunshine! I'll add this for completeness: The differences between the Interventional Cardiologist and a Cardiovascular Surgeon are in some functions the same in others different.
A IC is a cardiologist that has advanced training to not only perform and evaluate the noninvasive circulatory studies, but performs cardiac caths, angiograms of extremities, permanent and temporary pacemaker insertion, stent insertion, balloon angioplasty, probably missing some. It used to be a standard cardiologist performed all these functions except permanent pacer insertion. But due to advancements in technology, number of procedures, and quality control/risk management over time most/ institutions require the Interventionalist qualification to do all the invasive procedures. As Shell pointed out the cardiovascular(CV) surgeon is qualified to perform most of the procedures above, but generally are not involed in cardiac caths,stents. The CV surgeon is qualified to do any open procedure where incisions are made and extensive invasive procedures are done. The IC isn't. The CV surgeon would turn over the drug management to an IC or cardiologist. Surgeons at the Cleveland Clinic likely can do it all, but don't LOL. Decided to erase Interventional Radiologist DUH. Whew, did I really want to describe this LOL. Interventional Cardiologist or Cardiovascular surgeons, either one will be a good starting point. If one can't do something the the other will.
Location can drive who you think the most qualified. My county here, I would go to a IC first no question --Not sure I would even trust a CVsurgeon in this county. In Ohio, where I came from in Summit county I'd go to an IC, and in the next county above ---Cuyahoga, I go to a CV or IC at THe Cleveland Clinic, but likely wouldn't be allowed to go to a CV -their toooooo busy cutting. "Who's on First".
One of the keys that Shell identified was the noninvasive studies, I alluded, but didn't describe. All noninvasive studies should be done first and if these indicate an invasive study needs to be done than that's good. Anyone wanting to do an invasive first --shouldn't . It'd be like having a breast bx without a mammo/MRI first.
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