Here's what cheezed me off today

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited May 2014

    Purple, I had a really low moment today thinking about all the screw ups. I was told by the radiologist that there was a spot they had been watching for years on the Mammo's. DUH. Then mysteriously, all the films disappeared. 
    Now I get cd's burned on everything with the report on the CD, and a written report.

  • purple32
    purple32 Member Posts: 3,188
    edited May 2014

    Purple, I had a really low moment today thinking about all the screw ups.

    SAS
    I soooooooooooo can relate !  Sure been there. I do a whole lot of " Monday morning quarterback" stuff which of course is not good at all.

    At one time, I had an entire closet full of MRIs, test results,  etc ... from the past 15 yrs  ( My health went downhill with odd symptoms round that time-  I was 41.)  I trashed all of it last yr., and it still bothers me sometimes!

    If all DRS treated their pts. the same way they would treat their own daughters or wives etc ... a whole lot more of us might be better off! I have an appt. with PCP for my ' mystery rash ' today - sure hope he listens.

    Take Care , sas.

    Hugz

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited May 2014

    Purple thanks.......Hate to say it, try me after you talk to your doc, about the rash. Not that I know everything. I've just had soooo many firggen things happen which I have had to find "Novel" ways to treat them b/c standard treatments aren't working or dx may be done by another method.

    One the records, I still have 9 ring binders from Dh's and my time in 2009. A couple from 2010. Oddly, I'm still pulling info from them from time to time.. So I will hang onto them for awhile. :)

  • purple32
    purple32 Member Posts: 3,188
    edited May 2014

    SAS

    I've just had soooo many firggen things happen which I have had to find "Novel" ways to treat them b/c standard treatments aren't working or dx may be done by another method.

    I understand * all too well*!  Had to DX myself and usually drs. get very pi$$ed off when you do  ( hey, someone has to! )  he listened today, agreed with my DX and  helped.  Still wish I had all those old records!

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited May 2014

    Purple, so, your dx is? And treatment Is? If my curiosty is too much let me know. I won't be offended. What records would you have liked to of kept and why? May influence me if I get into a de-cluttering mode. I have looked at the ring binders and keep thinking when will they go. But every time I need to retrieve something from them , it amazes me. 

    Off to dinner with DBF :)

  • purple32
    purple32 Member Posts: 3,188
    edited May 2014

    sas

    chronic uticaria caused by  sudden change in body temp /going into chilly pool. Problems with thermoregulation.  I have an autonomic disorder .  Also flared last summer when I tried to exercise until I stopped it all ( exercise induced uticaria. )  NOBODY could figure it out.  many tests and angst.

    Doesnt sound like much , but lasted 5 mos. and with LE, skin was compromised, had to basically sit out the summer and now , here we go again.  Can get quite serious where one can go into shock...stupid me going into the pool again, but I did not know.    MY BP is extraordinarily low and ESP now as I have given up the saltshaker since my friend lymphedema joined me.

    As for records, I'd like all of them!


    Think I could have buily a lawsuit somewhere along the past 15 yrs. but then ...  who would be my DR?

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited May 2014


    Ah --can't do anything without something happening. Thermoregulation. Hmmm check out around or before page 26 on Hot flash forum. There's a schematic(whatever it's called) That was done by Freedman out of Wayne State University. I called him and got permission to use it.    google him and Freeman---they've researched hotflashing for several decades each. They are in competition with each other.

    Couldn't find it.  The scrolling , has caused a sleep attack---hmm like hypnosis---the swinging of the watch. I'm out :)

    Okay awake 8:30 pm. Hot flashing involves thermoregulation. Maybe between both researches you can find a pearl

    Autonomic nervous system...... What about Bata Blockers? Like Inderal aka propranolol? First drug in the class from the 70's. Found to have many other uses----migraines, tremors, more I'm blank. It's original use was BP then heart. Not used much for heart and BP anymore b/c of newer drugs. Metoprolol is used for tremors now .

    Purple ANS problems like yours have been written about for maybe, but still are beyond the usual doc. Nice detective work ThumbsUp sassy

  • purple32
    purple32 Member Posts: 3,188
    edited May 2014

    sas

    Not too sure what you are talking about,  but I will hunt around.

    THX

      * Found it !  thanks.  Intriguing,  but not too similar to my case.  Mine stems more from terrible circulation, very very  low BP and DYSAUTONOMIA.

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited May 2014


    Purple added more to last post. You ARE a good detective keep looking. Read the pages of Hot Flash Forum until I dropped out. You might be able to make a connection. We did allot of good work in the early days.

    I dropped out b/c of brain tumor, focus wasn't there. It was a great group.

    I'm going to add scrolling to Insomnia as a sleep tool. Knocked me right out for 4 1/2 hours

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited May 2014


    Exercised induced urticarial ---Light bulb!...........Seems to me , I knew some one ........It involves Histatmine.  Okay Autonomic stimulation somehow triggers  the  allergic cascade. At least a dozen steps. Interesting. Last I'd heard of it they hadn't made it beyond the histamine. (very long time ago). Now they've made it to autonomic control. Well that's nice. I'm assuming sympathetic versus parasympathetic.  ??????? ANS stimulates an allergic cascade---no shit. 

    An allergic cascade only means that the steps of an allergic response have started. I'll say dozen or so. Benadryl is used to interrupt the step that releases histamine. Epinephrine is used to interrupt- LOL I forget. But it's late stage. Reverses the critical occurrences in an allergic response i.e. bronchospasm, blood vessel dilation which leads to collapse of blood pressure.

    ROTFLOL-----that's the beta response. So, I remember part , but not all i.e. what stimulated the beta response. Probably wasn't funny to you :).

    But the allergic response is usually associated with an antibody --antigen contact. Antibody---body recognizes a foreign substance   i.e antigen. Antigens are protein based.

     The Body develops antibodies after being exposed to something that has  triggered the immune system. The why of triggering is still unknown---or maybe I haven't kept up. But if the why were known , we would be doing something about it. Since allergies are skyrocketing i.e.peanut allergies, I would say we haven't got a clue yet.

    For example, bee sting first time---won't illicit a response, b/c antibodies haven't formed. Then antibodies may form and the 2nd sting  causes an allergic cascade from minor localized response , up to an including anaphylaxsis. Usually most people have heard of someone getting stung the first time and going into anaphyllaxsis. But there was a prior exposure thru inhaling bee dust. Hope that was a decent example.

    I know there has been oodles of research re: allergies in kids and exposure to foods at an eraly age can lead TO ALLERGIES----LOTS MORE STUFF.... But

    Purple, What have you found re: ANS stimulating the immune response

    In a younger time, I'd get my adrenaline going and research the hell out of it. But my adrenals now just say F*ck-it

    Going to go play :)

  • purple32
    purple32 Member Posts: 3,188
    edited May 2014

    But my adrenals now just say F*ck-it

    Going to go play :)

    Sas
    Sounds me to me like you knew *quite* a bit about it.  MUCH  More than any of my drs. thats for sure !!!!!!!!!!!!  Yes, you understand -  you hit the nail on the head, my friend.

    You said :  "blood vessel dilation which leads to collapse of blood pressure...."   This is where my ANS comes into play.  MY HIGHEST  bp is 90/60.  Thats was with heavy salt loading anhd V8.  Have all low salt food since LE and no slatshaker. I can just imagine what my BP is now  (ugh ugh ugh ... not good, I cna tell)  Anyway, with autonomic dysfunction, low BP, low cirs. impaired lyphatics, the vasodilation causes all the blood to pool to the extremeties and well, a cascade of symptoms begin  ( tachycardia to attempt to get the BP up, icy cold feet, carpopedal spasms, dizziness , etc etc etc ...)  But if you go to a derm DR they will say :  Hmmmm, rash. Pool.  Chlorine ?  ugh

    Sure wish I could say F*ck it  , but not just yet  :>)
    G'nite.

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited May 2014


    Purple, maybe this will help your study. Most of the bodies systems(7) have a "negative feedback mechanism" That allows the system to check if it's working.  Say the control is A. A sends a message to BCD to do something. EFG senses whether BCD are doing their job. E, F, G all sense something different. They independently send messages back to A. A decides what to do. If B,C, or D aren't performing right A sends out another message. A >>>BCD>>>EFG>>>A>>>BCD>>>EFG>>>A>>>etc.  It all happens rapidly and continuously. Until something interferes.

    "blood vessel dilation which leads to collapse of blood pressure...."  " the vasodilation causes all the blood to pool to the extremeties "   First a description of the vascular circuit>>>heart>>Aorta(artery, slang Big Red) >>branching arteries>>arteriole>>capillary>>venule>>vien>>Vena Cava(vein, big Blue)>>Right heart>then lung circuit>then left heart.

    The arteriole is responsible for constricting or relaxing which will increase or decrease  the pressure. Analogous to a garden hose with thingy on the end that you turn to change flow. Lol can't think of word.  When the arteriole doesn't work right then pressure changes can cause problems. If it constricts without responding to A's messages to relax, it results in too much tension in the line. i.e hypertension. Conversely, if the arteriole relaxes too much, there's too little tension in the line i.e. hypotension

    In the case of the vascular system ---hypertension= high blood pressure, hypotension= low blood pressure. The arteriole is responsible for the changes. The ANS is responsible for changing the tension on the arteriole.

    There is a pressure gradient in the vascular circuit. The arterial pressure is higher then the venus pressure. If the arteriole malfunctions and dilates the pressure within the capillary changes. This allows leakage of fluid from the capillary into the space outside the capillary. This fluid can flood the space outside the vascular circuit.  This happens in certain conditions i.e ANS dysfunction; Septic shock; Drugs that are meant to lower BP, but are working beyond what they are meant to do, infection, immune response

     If the pressure in the venus side changes by becoming to high, then it can reverse the flow by changing the pressure in the capillary . The capillary can't withstand the pressure and the fluid floods out into the space outside the vascular system.

    Increased capillary permeability is the official wording. Causes>>changes in either pressure gradient from the arterial side or venous side. Changes caused by drugs. Changes caused by chemicals either internal, or external.

    Flooding from the capillary can occur b/c of two different reasons. Either the arteriole failed/changed, or the venous system pressure was too great and back flowed.

    Work to understand why the arteriole fails

    What drugs are you on.

    When edema occurs in the lower  extrmeties or anywhere, it creates a logjam. When the logjam occurs nothing flows right. Other structures are compressed because there too much pressure on them from the extra fluid.

    A river logjam is an excellent analogy. Logs pile up the river stops flowing. The river banks overflow. What is around the river is covered. Say there was a pumping station that usually filtered the water from the river to be taken and cleaned to be dumped back into the river. The pumping station can't work right. It no longer is filtering the water from the river.

    The logjam creates the flooded area, the pumping station can't get the gunk out of the water. It all is a mess. All this stuff just stagnates. Things start to grow.  The growing stuff affects the things around it.

    The bodies usual protective mechanism is the lowly lymph system. The reason I say lowly lymph system is people in general don't know about the lymph system. The high and mighty nervous and cardiovascular system, even grade schooler's can talk about. But the lowly lymph system is ignored until something goes wrong.

    The lymph system is analogous to the filtering pump station in the logjam example. The lymph system filters i.e. cleans the area around the cells, picks up the garbage thrown out by the cells, moves it to the transport system i.e. lymph network. The lymph fluid is taken to the lymph nodes which further cleans up the garbage. The fluid then continues from the lymph node and is transported to the thoracic duct where it's dumped back into the vascular system.

    With edema, the lymph pathways can be compressed. It can't pick up the waste products that the cells throw out, and carry these waste products away. Those waste products can cause multiple problems, infection-cellulitus, rash associated with bodies immune response to stuff that's irritating cells.--release of histamine which causes an itch.

    This is an area to study purple --"what is the bodies response when edema occurs". Hope some of this helps :)

     

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited May 2014


    Purple, hope this hasn't made you insane. There is more I could have put in, but I find learning these thing in bits and pieces is easier than all of it once.

  • Rockym
    Rockym Member Posts: 1,261
    edited May 2014

    Yay!!  Nips up one and all!  My boob check came back clean.  Whatever microcalcifications they saw 6 months ago are no longer there.  And to think they wanted to biopsy and disrupt the inners of my breast.  This just goes to show that sometimes you have to be your own advocate.  I even picked up my disk and when I looked at it this afternoon, I could see the calcs from last time kinda came together to make just a regular macocalcification.  The doctor said I was good for 1 year.  No more 6 month scares.  Happy Mother's Day!  When mom is happy, everyone is happy!

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited May 2014
  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited May 2014


    Accept is it mammo or MRI?  If mammo & mri rejoice.

  • purple32
    purple32 Member Posts: 3,188
    edited May 2014

    And to think they wanted to biopsy and disrupt the inners of my breast....
    YAY Rocky!  YES YES, always be your own advocate  - no one better!

    sas

    No, not yet but it did make me  a bit insane last summer when the mystery rash first appeared !!!!!!!!!!!!!

    I know about this stuff all too well, actually. It's the DRs who dont.  And besides, with my other conditions, the things that *might* make this improve would make my LE worse.  Not drugs in my case.

    I have P.O.T.S aka postural orthostatic tachycardia syndrome...very low BP  ( now complicated by the fact that I dont eat extra salt with my LE) and I get  a racing heart ( tachycardia ) to compenaste when the BP drops. I suspect it was due to vasosilation from the chilly pool.  It is also exercise induced.

    It's a failure of the autonomic system.

    I was dx by tilt table test app 15 yrs ago- took forever. VERY FEW Drs in the U.S. know wbaout his  illness.  When you add copd, cancer , lymphedema etc ..to the mix, things get bad and the waters get even murkier.

    I am having a  severe exacerbation of this condition right now.  I went for months and months without being too symptomatic.

    I think I started to get a little lower ( BP) around the time I  began 'exercise'  (PT) for my knee.  The chilly pool was the straw that broke the camels back. 

    There is a rare subset of POTS known as mast cell activation disorder P.O.T.S. Histamines release .  allergic reactions....   vasodilation.  My feet are like ice cubes.  

    Sounds like this. I am getting closer to answers...but dont like any of them , thank you  :>)   !

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2014

    Rocky, picture in your head a tubby little woman doing a major happy dance! Soooooo glad you got good results!  Nips up and naughty dancin'! It's interesting reading about cats with thyroid problems. I'll be watching my furry babies for symptoms. I once had a kitty who was epileptic and now have a fur baby who is completely blind. My DD named her Tofu.

    Purple, I should have mentioned that onc. recommended testing for the numbness that comes and goes in my legs. Just like Rock, the numbness in my shoulder is permanent.

    So much has been happening lately, I completely forgot my ReBirthday on April 19th. THREE YEARS OUT! Now find that damn cure!

    sas, got lots of reading to do. Thank you for keeping us so well informed. Hope you're feeling better.

    Someone mentioned something about salt and blood pressure. The dr. just put my mom on NoSalt for her high BP. Anyone tried it? 

    Nips up, Hugs and Sage Cheezers!

  • Jazzygirl
    Jazzygirl Member Posts: 12,533
    edited May 2014

    Rohanna- No Salt is great. It is actually a "kind of salt" but is KCl vs NaCL and it is believed the sodium is what drives up the BP. Eating enough potassium helps to balance that too (things like bananas, apricots, orange juice all good for that). .

    I had salt sensitivity and BP spikes starting in my mid 30s and cut out the salt and been using this for years. My BP finally went over the edge after two surgeries in 2012 (including the breast surgery), so I take licinopril now now, but still use No Salt for all my cooking and other salty needs. Great on popcorn!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2014

    Thanks Jazz, my mom likes it so much, I went out and bought some. Can't tell the difference. Maybe I'll cut off one more old age problem before it starts!

    Rock, I buy some stuff called Anatabloc at GNC for inflammation. Seems to really help. Send me the addresses of your neighborhood _itches and I'll take care of them for you. JK! Or am I?


  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited May 2014

    Hi friends-----oh were so much into stuff----you've probably been cautioned about salt substitutes. They substitute with potassium. Can be a problem.

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited May 2014


    Purple you are a perfect person to get on the bandwagon of genetic testing for drugs---------- i'll bring back the link, start with my posts in feb2014.

    You have do to allot of study in order to protect yourself.

    https://community.breastcancer.org/forum/73/topic/798301?page=6#idx_175

     

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited May 2014



    member name deleted : it's all the Gists' with their own body parts, not paying attention to what the other Gist' are doing.

    (insert Nystatin powder---that powders good. I'm talking non-medical powders as being a breeding ground for bacteria and fungus --yeast).

    Sorry we were talking yeast infection in vulva area, not bladder infection. Ironically everything applies. With the addition for both- culture and sensitivity of urine and vaginal opening. Should have mentioned that above, but here it is now.

    Yeast is a bad neighbor. It is kept in check by the other good bacteria. When antibiotics are taken, they can kill not only bad bacteria , but good bacteria(bug) too. That allows the yeast(bug) to overgrow. Elevated sugar(glucose) levels is their nirivana food, and warm moist environment.

    Any ways before they give you an antibiotic - try and tell them that you will only take them, if it's based on "culture and sensitivity". Culture --they grow the bug to see what it is. Once the bug or bugs are identified, they then test it sensitivity against all the antibiotics usually used for that bug or bugs. 

    Bugs can become resistant to antibiotics which means the antibiotic no longer works. Also, there is a rating system-- one drug may be a 1 in sensitivity, another may be a 8. The better drug is a 1. It's more sensitive to killing the bug. 8 would be weak.

    What happens too much, is gists order drugs without testing. You could be taking a drug that the bug is resistant too. The drug isn't doing you any good. Bug wins. OR the drug is weakly sensitive to killing the bug. If the bug is strong enough, it can overcome the drugs ability to kill it.. Bug wins again.

    Each time you take an antibiotic it affects the whole body. Antibiotics can over time affect the immune system. This is why you want to take a drug that is going to work. Less wear and tear on the entire body and the bug is dead.

    Know what bug  is by culturing. Know the sensitivity of the bug to the drug.  (lol just made that up it rhymes)

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited May 2014


    This last  post is a repost to protect yourselves---Ocd me trying to protect everyone sassy

  • purple32
    purple32 Member Posts: 3,188
    edited May 2014

    I just dont touch a salt shaker - period.  Have not tried a  sub. and I am as careful as one can be about added and hidden salt ....Though my BP has suffered <dropped> because of it.  I would think most ppl.  would like that result.

    sas

    I've been on several bandwagons for a long time ( weary)  but it hasn't helped m any .  I'm just not 'big enough"
    THX

  • Rockym
    Rockym Member Posts: 1,261
    edited May 2014

    Thanks everyone for the positive thoughts.  I was able to have a great mother's day knowing that my boobs can rest easy for another year... of course the mini paranoid voice in my head was thinking, hey is this really good that they are not looking every 6 months anymore and what about the scare that film reading doc put me through only to find it was nothing.  I crack myself up sometimes.  My new song for the year...

    Let it go, let it go, I can make myself insane,

    Let it go, let it go, I'm not in any pain,

    Here I am with my boobs okay... Let's get on with life... 

    There's always more shit anyway!

  • Jazzygirl
    Jazzygirl Member Posts: 12,533
    edited May 2014

    Rocky- glad to hear your latest films were clear. Onward to living your life as fully as you can!

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited May 2014

    Hi, popping in. I was posting with another member. I thought sharing the below information may be helpful to you Winking.

    The link www.needymeds.org is to a web site started by a Social Worker and a doc. It is a tricky site to use. The first page leads to a several hundred resource pages. But I think this first page, does not project the wealth that lies beneath. Be patient when following the links within the site. There are sections that are disease and drug specific. The specific page then links to lists of organizations that provide monetary or other types of assistance.

    Register first and do the request for assistances form. Reason: the request for assistance form is filed. If you apply to 1 or 20 organizations/companies, the forms don't need to be repeatedly filled out.  The system is designed to pull information from the original form. There may be a few particulars that need to be added to a companies/organizations form.

    All the pharmaceutical companies have patient assistance programs. All the drug manufactures are listed there

    The other way to reach drug manufactures is 1. call the manufactuer patient assistance number(goolge keywords: drug name and manufacturer, then to webpage>>>patient assistance. Very time consuming.

    There is so much more on www.needymeds.org. It took a bit of time to wander through the whole site. I've shared a telephone walk through with many friends and relatives. I even called healthcare facilities to tell them about this link.

    For completeness, there are many ways to get financial assistance for whatever you need. There are organizations that will do things for you i.e volunteers that buy groceries, drive, install handrails, build wheelchair ramps.

    How to find the info besides from the link above?  FIND the SOCIAL WORKER(SW).  It's there job to know these things :)  Talk to all of the following 1. cancer center SW,  2.hospital SW, 3. Insurance companies SW, 4. County SW. 5. church outreach leader.

    I requested from my insurance carrier, a consult with a SW. That one appointment with the insurance carrier Social Worker, led to grants totaling $10,550. The meeting with the cancer centers SW, led to coverage of neulasta  for $4000.00.


  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited May 2014


    Rocky, ditto on the mammo-------- We're all insane, just the degree LOL

  • Rockym
    Rockym Member Posts: 1,261
    edited May 2014

    sas, what the heck did you write.... naughty stuff?

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