Bonfire of the Goddesses
Comments
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Granny... Hope you are cool and comfortable. Looks like another heat wave is on its way.
I am doing well. While the DH was hospitalized the first time, I scheduled a few minutes to have my Zometa infusion and blood work done. All is well and it appears that I am still menopausal. So it looks like I don't need anymore Lupron shots. My kids are all well and happy. There is an expression that you are only happy as your least happy child. Both sons celebrated their birthdays while their dad was hospitalized last week. Their happiness was and IS what gets us through the tough times. As long as they are all happy, despite whatever is on our plates, we are happy.
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VR---i heard that expression before and it is sooo true.
Sometimes i worry so about my kids and im not quite sure if they are truly as happy as i would like them to be.....so i do worry.hey its my middle name and the good old Italian guilt.
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Granny - Please don't throw my MO into the fire. Not only is mine really cute, but he really takes good care of me. I would like to keep him around for awhile.
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VR were you able to go back and read my whole post. I know how this stuff works--honest LOL. I was there at the beginning of one of the first EMS services in the USA.
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SAS... Heaven forbid we have another adventure... I'm hauling you up here to direct the DH's care!!! Believe me, I am no shrinking violet. You can't believe the bureaucracy and nonsense that we've had to deal with since the DH was diagnosed with his rare genetic metabolic muscular dystrophy. Whether we show up at a hospital or an airport with his "Go Bag" you can't believe the scrutiny we have to deal with. The DH is in a clinical trial and takes an oil similar to Lorenzo's Oil. It keeps him alive and can't go anywhere without it. If he's under anesthesia or needs to fast, he needs a special IV. We have documentation up the wazoo and we STILL have to go through whatever hoops the folks shove in front of us to get to do what we need to do. Whether getting on a plane or getting to and into a hospital is a headache. And just when we think we have things worked out, some bureaucrat gives us bullshit! And those cops and EMT were close to the last straw. While in the hospital I was ready to slap this nurse. Why? Because she wanted to give the DH his meds because it was time for her to give him his meds.when I explained he couldn't have the meds until after he ate, she INSISTED that he have his meds and then ignored me and then asked him AGAIN if he would take his meds. When he said he couldn't have them before his meal, this sorry ass who calls herself a nurse said, "Are you REFUSING the meds?". To which I replied,"No. He is NOT REFUSING the meds. He just can't take them until he eats."
Spoke to her supervisor and that was the last time she was at his bedside. Honestly.... Is there a dearth of common sense????0 -
VR---ya gotta chill honey....you sound like you are ready to explode...Did I ever tell you the new breathing exercise that my new PT told me to do 3x a day to relax.....deep breath SMELL THE ROSES exhale BLOW OUT THE CANDLES....10x.it works
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Granny... I am trying to be patient. I have just a drop of post traumatic stress.... After he survived his other heart procedure last fall, none of this latest drama was on anyone's radar. It's nothing short of a miracle that he is alive. All those cardiac tests are going in the bonfire because they were worthless! The echo, the stress test, the angio... The ekg's!!! None of them were accurate!!! The two 100% blockages were not showing... But what nearly killed him was the fractured, ulcerated vessel which they FINALLY figured out in the nick of time. Stressed??? You betcha!
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VR explain nothing ------- If a nurse wants to give him medication outside his routine------either scream or be nice---------------screaming might be better b/c--they will pay more attention. Your husband has a medical condition that is unknown to providers----unless they listen , his condition could worsen.....Rarity in medical conditions----and understanding of variences is not taught in any school, to any significant degree. Thus, only the person that has a mind versus rote training is going to understand.
Did you get , my message how to get him to the right hospital?
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VR ask for a talk with the HOUSE Supervisor>>>describe thed need, ask that this need be entered into his Pharmacy record and his medical record. Ask to be shown that it has been done------this will piss them off----b/c any variance that causes him harm will be documented.
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All of you here know my past life was a nurse. I started as an aide in 1969 , but I was still 18 . I figuied watch it from the bottom up. I loved nursing and was proud of it until family memebers became ill---and I saw all the errors. I was disabled. Yet I have knowledge. What breaks my heart and beliefs is the errors. Protect your selves by always having someone with you . Such a sad statement-breaks my belief
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SAS... I did read what you posted about getting to the proper hospital. I just want to add that my mother was a director of nursing at a city hospital for many years and my sister is a nurse. My sister's husband is also a former EMT AND a retired cop. So... I am not intimidated by people in uniforms and I have EXTREMELY high expectations! Regarding the pharmacy.... I have a TPN for his special IV and I have a lovely pharmacist now working with ALL of the area hospitals to find out their protocols for an emergency admission for him. So far, she has found that his special IV isn't stocked at all of the area hospitals, but can be received quickly (within minutes) from one of the local hospitals that does carry it. Regarding his type of special oil, following a huge fight with Columbia Presbyterian Hospital, mind you the same hospital that successfully performed Bill Clinton's bypass surgery, they now carry his oil in their formulary. It took me one full year to get THAT accomplished!
I told the DH that this latest experience was our test run for a "real" emergency. I have a lot of homework to do while he recovers. I will say though, that despite the several awful experiences... There were some terrific people dedicated to making sure he did receive the best care and for that I am grateful. Frequently I am told that his case is challenging and many people have also said that they have been humbled by the experience of helping make him well. I always remind people that the real profiles in courage are the parents of the newborns born with these rare orphan metabolic disorders who get their babies out of childhood without catastrophic consequences. Thankfully, the DH's disorder, while bad, isn't as terrible as some of the other individuals that we have met. I often wonder how those children's families cope. I do a lot of praying... For all of them as well as for all our sisters. At the end of the day... I am blessed.
And Granny... I have heard many friends say that they wish their children were happier. I think as mothers we are all genetically predisposed to wanting nothing but happiness for our children. Perhaps our lives would be a little easier if that thought wasn't so ingrained in our minds and hearts. Anna Quindlen just wrote a new book and she touches on that idea. She mentions from the time our children are born, we worry about them. And if that isn't bad enough, we worry about how their children will be as well... So the worrying NEVER ends. And then she goes on to say that the greatest hurt she could imagine would be seeing her children hurt at the thought of them having a sick child of their own.
Looking back at my own experience of supporting parents of children with these devestating metabolic disorders, I too am humbled by them as well.0 -
Vr---you have a drop of PTSD????is there such a thing as a drop??
gosh I wish i could run up to you and give you one giant gentle huggggggggggggg
The things we find out about the white coats,big pharma,FDa.FCa etc.can give you a huge dose of PTSD.
Know that im thinkin of you and DH....
I wanna burn all those bastards who gave you this grief........
start up the fire again!!!!!!!!!!!!!!!!I got the lighter!!!!!!!lets goooooooooooo
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I am throwing into fire my left arm lymphedema. This SUCKS!!!
I need to add some kerosene, gasoline, fertilizer, whatever else is combustible! BURN!!!0 -
Sheila, you are SO RIGHT about not trusting hospitals and all that goes on in them these days! I refused to be admitted for my BMX last year, BS said I should stay at least a day or so, I refused, she let me go at 18 hrs post-op so I was never on a regular floor. I still got a post-op staph infection (luckily not MRSA), but it was probably more likely due to the allergic reaction across my chest and incisions from the antiseptic prep they used (NOT iodine - I have no problems with that, but a newer one, probably more expensive, supposedly "better" at preventing infections, but also VERY COMBUSTIBLE with cautery - geez, if I had known that going in I would have raised a holey stink! - but I digress....)
I taught pharmacology to nursing students the past couple of years. It was their only pharmacology course, and they had allegedly already had pathology. So I tried to tie in the pathological mechanisms and also normal physiology with the drugs so they would understand WHY some drugs were more effective, had more SEs, interactions, etc. But they complained - all they wanted to do was to have me hand them a list of meds, what they needed to memorize about them, and take the exam. It had nothing to do with talking to patients and finding out how those drugs were affecting them. They didn't want to understand the relationship to pathology - told me they already had a path course and "don't waste our time". *sigh* They frighten me.
I have similar problems with my pharmacy students. They don't want to think or understand concepts - they just want sound-bites, preferably with You-tube, they want to be entertained, they cannot problem-solve. They frighten me.
I have heard similar complaints from my colleagues who teach other health professions students. Not all students are like this, but so many of them are that I am very frightened for the future of health care. Where does this start? I think it is very early, maybe even in pre-school, where they have been regimented in doing what they are told, going where they are told and when, playing organized sports but not lying on their backs in the grass watching clouds and daydreaming, playing electronic games but not reading books under the shade tree, hiding out so as not to have more chores assigned. And if they get anything less than an A or B in a class or on an assignment, their parents head to the teacher to demand to know why little Mary only got a B on her assignment as it had taken her a couple of hours to do it, and after all, she is very bright and "deserves" an A....blah blah blah....
I think I am getting old. *sigh*
Into the fire with health professions students' attitudes!!!!!!
By the warmer fire, I am basking in the energy that I have had for the past 4 days! Don't know if I had mentioned it on this thread, but I have had severe fatigue ever since my first round of chemo, never got back to my old energy level, which has been very distressing. I would sit and look at things that needed to be done, but just couldn't. Saw my PCP/palliative care provider, started new meds, and have been able to get out of bed before 10 am, have energy to do routine household chores (laundry, dishes) AND do some fun things!! My attitude has improved, had a very good discussion with my MO, have forgiven her, and am moving on with my life. Well, I can't dally by this warming fire too long - got things to do, places to go, people to see!!!!
nibbana, I am so sorry you are having LE trouble. I have a little left-over butane from camping stove to toss on for you!0 -
VR--yes PTSD out the wazoo. I knew from past missives that if there is anyone who could get things accomplished it would be you. Great accomplishment about getting the hospitals to cooperate on TPN and oil. You have done something highly unusual already.
Now working on the Medical Director of EMS. This person by law in each state is required to sign The SOC Standard operating Protocols. Effectively, this med director is taking responsibility for all the actions of emt's functioning on their orders. It is an awesome responsibility. there may be lax directors out there, but I have never met one. Once you get their cooperation , a decent plan can be developed. Incorporate the concepts re: Nearest appropriate facility, into your vernacular. AS with all fields of study if you use their language they tend to respond better. I suggest creating a file to leave with them That has typical biographical info, copy of history , one -two articles that best describe the condition, An outline of what you have gotten the hospitals to agree to, List of qualified docs/phone numbers and which hospitals they practice at.
You likely have much of this already gathered from previous trips to hospitals and polane rides. Set up meeting with med dir.--request at least an hour.. Send letter defining your goals, and file at least a week ahead of meeting for their review. You will be able to tell within a few minutes of contact if they've read material. If they have Yay. If not it will take a little longer, but assume they will catch on quickly. EMS med directors are generally really, very much a cut above other docs b/c of the enormity of their responsibility. If you want to PM your cover letter for my review , if you think that would help, do so.
Again, what you have accomplished so far is out there in accomplishment. Most people don't realize the competition between hospitals--I've said they are like neighboring Kingdoms, the king is the CEO, employees are --serfs, Knights are docs, Directors are Lords and Knights. So, EMS service areas were fiefdoms each highly competitive to be the best---Testosterone wars. Putting it in this context---you can see getting them to agree on anything cooperative is like getting a Treaty signed.
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LINDA---Everything you have said is so true. I did the same thing with my medics. Trying to get them to understand the pathophysiologic relationship to the treatments and drugs. Most got it , but some said the same thing "why do I need to know all this --stuff--I just need to know how to give the drug".--sheez. What was gratifying was the best medics were so good that others wanted to emulate them, that did make it easier. In this case the competiveness of thes Knights did help
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Nibbana---- Welome I think your fairly new here---we are nice folks, that really care about each other, so, stay around and become one of us
-LE sucks, it's the dirty secret of BC that I believe doc's truly don't care about. Let them burn for their lack of due diligence in protecting us from it. 0 -
sas-schatzi,
Yes, into the fire "I don't care about lymphedema" docs. Here's some half empty propane bottles from my backpacking stove too. Let's get this fire going so it can be seen from space!
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sas - I have a full propane tank on my gas grill. We can really get this fire going!!!
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so now LE has a name...the dirty little secret...I think most drs.have not got a clue about LE.The BS only knows how to deal with the bc.the onco only wants to push pills and do bloodwork...the internist really knows nothing either...who is left?Everytime I mention LE its like DUHHHHHHH.Uless your arm or breast (or any other part of your body is exploding with the LE) they dont get it....its not their field....So off to therapy we go hoping they know more then jack squat and they do the right thing.I had 2 different Physical Therapist both LANA do nothing the same...
Sooooooo I bought an old large lighter and im gonna kick that fire up a few notches.....
All the drs.that have no clue about LE go run through those flames a few times.....
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My surgeon is a general surgeon but I doubt a specialist could have done a better job. He put a lot of emphasis on the seriousness and prevention of LE. He discussed it with me both before surgery and at the discharge conference and checks for any signs of it at my follow-up exams. My MO has reminded me of the followup precautions several times. I must say I've been very happy with my medical team.
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Chabba - And that makes all the difference in the world.
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Chabba----and you live where????????
You are lucky...i have great drs.really great but they dont know shit about the LE...my RO who i stopped goin to cause i thought i didnt need him was the only one who noticed the edema i had last year....maybe its time for a visit to him....im just so tired of all these white coats....
when was the last time i told you how much i hate hate hate this damn disease.....every part of it suks!!!
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I live in a little town on the WA coast but have to go inland 20 miles to the Dr. My surgeon is local but the MO comes out from a regional clinic in Olympia. I did not like the first MO I saw from the same clinic system but the new one is great.The first one was great in the lecture mode but did not want to deal with questions.
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Chabba........I lived in Yakima, Wa for 1 year...........loved it there..............my husband was in the Army........it is the closest thing to heaven when you go up to the mountain passes................I remember it well...............hugs
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Ducky, we used to live in Olympia. The one thing I really miss is seeing Mt. Rainer every day.
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oh Chabba..................I have pictures of my husband I I with Mt. Ranier in the background.............we only had to go a short distance from our Apt........and we were in heavenly bliss...................the streams, the snow capped mountains, it was breathtaking..........................would never have gone back to Philly, except I could not do that to my Mother................she was my life, and my best friend.................I was an only child, and when I went all th way across the country it broke her heart................plus I was preganant 4 months when I came home.............
STill say it was the most beautiful place I ever lived in...................hugs
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Ducky, funny story on myself. In'89 DH and I took a short road trip down the coast to the Columbia,up through Yakima to cross Steavens pass and then south back to Olympia. After living at that time for 25 years on this side of the Cascades and like everyone here thinking of My. Rainer as The Mountain and Our Mountain I stared with momentary resentment as though a mountain shouldn't have a (to me) backside and share his beauty with the rest of the world.
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Chabba--so true, what adifferent prespective gives
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Chabba..........it is magnificent, and only a couple miles to the passes from where we had lived..........there was "White Pass" which closed around Oct............Snoqualmie (which was open all winter, but trust me, it was a hair raising drive across that mountain pass to Ft. Lewis where he was discharged from", and of course Mt. Ranier which was gorgeous...............the day we left Yakima on our way back to Pa. it was 28 degress below zero, and it was Feb. 27th, 1957..................My first son was born in July that year......I was just 22 years old..........I do miss those wonderful days.
We picked pears, in the orchards, apples, and always stopped at night on the main highway out of Yakima to buy "Spudnuts".........they were donuts made with potatoes..................and a 1/2 gallon of homemade root beer.....................what wonderful memories..........my husband has been dead for 20 years now..............I loved Washington State..................also though Oregon was beautiful too, but nowhere compares to Yakima..........we drove from Phila., Pa. to Yakima Washington, 3,400 miles cross country.............what a journey, and we ended up in the Yakima Firing Center for the next year............we had a lovely apt. off base, and it was pure heaven.................nice to remember.
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