Well, I have certainly learned what I need to do.

I will draft a letter to Dr. G tomorrow INSISTING on a pump.
I will then call the office (I may or may not get the medical assistant) tellng them that I am faxing said letter!!!

Now we won't know anything until Tuesday (about his foot surger).

So I do have some time (and I will follow up with the medical assistant).

Now, I have no idea if Alan's medicare Insurance plan will cover a pump. It covers the drip and I hope they don't give us any problems with sending us a pump.

This is all on me from now on. Alan is just not capable of calling Doctor's offices, and demanding anything. He is much too laid back a person.

It's not going to happen. He would stay there and be dripped and not way a word. It's just how he is.

So I shall do my ASSERTIVE THING.

Will update.

Melody

Yes, insist on the pump. I had to and as far as I know there is no added cost. Have your neuro write out orders that such and such volume is to be infused over four hours. If they cannot handle it or your request tell the neuro. Again , dealing with a few agencies and every nurse would pull the same act. I knew my rate was not to exceed 70 cc's/hr. or my blood pressure would bottom out and I felt awful.What did one nurse still try to do because my b/p stayed fine with that rate. She say's oh I think I can increase it, don't worry.They do not understand just because your b/p or pulse is ok they think ok just go quicker. No way. When medical people say don't worry I do. It's there famous last words. Well trust me she did not raise it. There can be side effects that are dangerous with infusions that are too fast. When I had to go to the e.r. a really nice doc told me, do your research and get into a hospital setting, a safe enviornment to have your treatment. What baffles me is in the hospital they run it slower, at home it is always the same old story, the bum's rush. A nurse is to follow a doctors order not make up there on. They are running this i.v. with to me very little knowledge. Take care and good luck.

Is the IVIG helping Alan? what has improved? just wondering.

Joe:

I asked him this yesterday and he said "yes, I believe it is"

And he loves how he feels while he's getting it. All the pins and needles go away.

bye for now,

Mel

I'm glad you used your voice. I can relate to this like I said cause one of the neuros I saw with 5 calls I never got a call back and it was saying I had weird symptoms. I did finally after get a call from a med assistant. I don't get this I feel like docs feel there president of the us. Why can't they call back? Also it should be within 24 hours. I'm going to write a complaint letter to mine so maybe it will happen less in the future. I'm not going to hold my breath though.This makes me feel so mad but am glad your husband is hanging in there. Your a great caretaker I can tell.Have you been back to the support group?

Hi Daniella:

The next meeting of the Neuropathy Support Group is scheduled for June 21s. Only if there's an earthquake in NYC, (or Alan has to have an operation on or about that day), NOTHING can keep me from that meeting.
I might even see John Stamos walking in the street (like I did last time).

I just sent a fax to Dr. G's office specifically requesting that she demand he gets a pump. I was clear, concise and I wrote a good letter.

I ended it with "This is serious". So hopefully when her medical assistant comes in, she'll see the fax, and put in on the doctor's desk.

I can tell you why doctors don't return phone calls (like they used to do).

Baby Boomers got older, got sicker and need doctors. Baby boomers have diabetes, Parkingson, and PN. There aren't enough specialists to go around. So imagine 50 people in a waiting room, 3 doctors in the practice, and then later in the week, all the people are putting phone calls in, asking questions, needing advice, needing a change in meds. The doctors today are completely overwhelmed. I don't think for a minute that when these doctors went into private practice they envisioned all the patients calling them AS MUCH AS DO!!!! Nobody could have predicted this.

I think that's why their medical assistants do this. I don't think this happens as much with primary care physicians (like my Dr. Fred) but it definitely happens with specialists because EVERYBODY NEEDS EITHER AN ENDOCRINOLIGIST, OR A HEART SPECIALIST TODAY. I mean, we Baby Boomers didn't really take that good care of ourselves. We smoked, ate and drank more than we should have and many of us are paying the price. I only learned my lessons in my 50's . I now take a look at what I see when I go around the corner and sit on my friend's porch in the evenings.

You have no idea how many 27 year olds are smoking. Absolutely every one I see. Of course I don't go near them, I don't want to inhale that poison. But I did get in a discussion with a few of them when they put their cigarettes down. These are gorgeous, slim women, with excellent jobs, in banks or at medical offices. What is the answer I always get when I ask a woman "why do you smoke". They ABSOLUTELY ALWAYS TELL ME THE SAME ANSWER!!!

BECAUSE IF I STOP, I'LL GAIN WEIGHT!!! And they do drugs. I sit on the porch with their parents and grandparents and these people have no clue. Absolutely no clue!!! For example, one of the grandchildren just came back from Las Vegas. He's 25, adorable and he has a good job. But he likes to party. Nothing wrong with that, he's young and he works, right??

So I asked the people on the porch, "Did he win"??? and they looked at me like I'm nuts and they responded: "Win what??" and I said "are you for real, he just went to Vegas, what do you think he does there?" and they looked at me like I was bonkers and they said "Oh he doesn't gamble, he goes there to dance". I said "is that a fact??, why fly 2000 miles to dance when he can go to great parties in NYC???" The grandmother just said "I know my grandson, he doesn't gamble, he knows it's bad, it's addictive, and I believe him when he says he doesn't gamble". I just looked at her. I said nothing BECAUSE SHE WOULD HAVE NEVER BELIEVED ME.

But the best is when I hear them say "Oh, my kids never do drugs, they don't smoke pot, they WOULD NEVER TAKE AN ILLEGAL SUBSTANCE" Why do I think this is hysterical??? Because one day there was a party for my 75 year old friend's birthday. She's the grandmother. Picture a big backyard with a built in pool, a big table with a big umbrella and ten 25 to 27 year olds, so stoned, you wouldn't believe it. I walk in and I said "Are you kidding, your grandmother is coming, put that stuff away and start spraying the air".

They all jumped up and one by one they are all babbling "oh, they're smoking pot, not me"!!! I just said "Listen, I'm not getting into your business but even a 75 year old can smell what I'm smelling, do you think we're from another planet??" They quickly got their act together and they all shouted Happy Birthday when grandma walked in.

Two hours later, we are back sitting on her porch and the mother of some of these "kids", well she's saying "I know my daughter would never do drugs".

Now what the heck am I supposed to say??? Nobody would believe a word I say anyway. We just have to watch out for OUR OWN HEALTH and take care of ourselves. The next generation, believe me, most of them WON'T BE AROUND TO TAKE CARE OF US.!!!! We are our own best advocates in that department.

I also get this answer (about Smoking and weight gain) when I wait for my Access-a-ride when I leave Cornell Medical Center in NYC after my diabetes appointment. Do you know how many doctors, and nurses, go out and grab a smoke on their breaks. I once asked a doctor (I couldn't resist and she was very friendly), I said "you do know what you are putting in your body right, I mean, it says so right on the pack of cigarettes??" and she laughed and said 'Oh I know, and you probably want to know why I smoke, right?" and I said "Exactly" and she said "I once quit smoking and I gained 40 ls". Never again.

So I said "well, it's well documented that smoking speeds up your metabolism, so naturally if you stop smoking and eat the same way and don't exercise well, until your metabolism gets back to where it will, well, naturally, you'll gain weight!!!" "So why not get the patch, lower your calorie intake, take a brisk walk (the same minutes you give to your cigarette smoking on your break, you could have walked around the block".

She looked at me, burst out laughing and said "It's easier to light up a cigarette". And this was from a doctor. So if a doctor finds it that hard to quit, just imagine the rest of society???

Oh, and I read somewhere that THE NEXT GENERATION WILL BE SICKER THAN WE ARE!!! Because of the obesity epidemic, our children will have more illnesses than we do.

So fast foward 20 years, and just imagine our children at the age of 40 and 50 trying to GET THEIR DOCTORS ON THE PHONE!!!!

Oh brother!!!!!

Melody

HI Melody:

Before my husband's death in February of 2007, he was in a health care center for the preceding three years. So many of the aides and nurses there smoked cigarettes. There was even a shelter for smokers, including residents and staff, in the outdoor patio.

They had had an indoor "smoking room" but that was discontinued because there was a big problem with the exhaust fans being able to get the smoke outside the building. So they put the shelter on the outdoor patio - it was just like a bus stop shelter and had a heater for our Minnesota winters.

I was appalled that a nursing home would even allow smoking by residents or aides or doctors, or anyone! I suppose this might be economic, that if not allowed to smoke there, people would go elsewhere.

Shirley H.

I've been talking about this with my friends - interesting should come up.... I'm officially a "boomer" and yes, we seem much sicker then our parents generation (most of my relatives lived into late 80's, early 90's)....but whats going to happen with this new generation - I think its just gonna get worse...

So many of us boomers have a plethera of illnesses (and how much can be credited to the destruction of our natural envionrment?)... and I can at least speak for myself and friends - we didnt sit in front of t.v.s or eat fast foot all day, we were not overwieght because we ate good food (fast food e.g. McDonalds for a 15 cent burger was a once a week treat) and played all day riding bikes, skating, neighborhood baseball, etc. - my parents only allowed t.v. at night after homework - even on weekends... we were expected to interact and play with each other, the kids on the street, etc, play board games on rainy games... and even gasp, read! Even eating healthy, getting tons of exercise, and not indulging in drugs or ever over-indulging in alcohol - so many of us are now sick - why? Many of us say environment.....

I think we're now growing a generation of walking disasters - they are going to desparately need all these specialists..... they dont exercise except if in some organized sport - all have t,v.s, computers, and their own phones, and spend much of their time motionaless in front of them.... they dont know how to play any more - or how to read a book (why bother - just google it) - I was always very thin, even eating like a horse - cause I never stopped running around..... with the ridiciulous images today of what is acceptable the increase in smoking is understood - these people dont know how or are just too lazy to try to stay in shape the healthy way.... (this is really sick - I lost 30 lbs in two months a couple years ago due to gastroparesis - I'm 5'7" and was about size 0- it was awful - luckily I had gained an extra 10 lbs due to inactivity from the PN so had a little losing room - the first doc I saw after this said to me - "do you know how many women pay to look like that?" - I changed doctors, he too was pushing the image - its not healthy)

As for smoking - I do have friends that smoke - but its more of an addiction then a cry to stay thin.... if you live in Los Angeles many of the beaches now even are smoke free zones - some whole citites - never in the workplace -theres usually an area if it's a smoking city for a business where employees must go outside and away from everyone else.... an interesting phenomena compared to 20 years ago....

Just some thoughts - but overall - if OUR generation is this sick - what is going to happen to the next? I shudder to think when I look at the kids I know right now graduating from high school..... again, how much of the illness we now see that we did not see before is environment? and combined with the majority of younger people taking even less care of themselves -its scary...

Shirley:
I probably told this story before and if I'm being redundant, then shoot me but it's an important story.

My mother was 75 in 1995. She was in Richie Manor Nursing Home in Florida. They took excellent care of her. MY dad was in there too with congestive heart failure. They actually let them share a room. I would fly down as often as I could but I had sciatica ad most times I couldn't get off the couch.

I once remember they had transferred my mother to another facility. That facility LOST my mother and I was on the phone frantically trying to locate her (I finally tracked her down to a place called The Sunshine Home (if my memory serves me).

Anyway, my mom was a lifelong smoker (as most italians are when raised with 10 brothers and sisters), no one thought it was unhealthy, just look at all those old Humphrey Bogard Films, EVERYBODY SMOKED IN THOSE FILMS!!

So I flew down every few months to visit them and at 7 p.m. at night, there was break for the staff. I would go on the porch with ALL of them and I would notice ALL of them smoked. Now there was my mother INSIDE with her cannisters of oxygen, along with everybody else in the joint with emphasema, oxygen, etc. etc. so once I asked one of the staff "Uh, you take care of these people and they have Emphasema and they are on oxygen BECAUSE they smoke, uh, do you not get a lightbulb moment here?"

This was the only time no one mentioned weight. They all said "we tried quitting, we can't do it".

So I go back inside and my mother (she had dementia for one week and came out of it). There was my mother all made up (I had fixed her hair and did her makeup, etc. as well as all the other people (you have no idea how much of my makeup stayed there in that place, I left eye shadows, and sudden beauty eye creme, and perfume, I mean, who cares?? it made them feel like women again!!!! So I'm wheeling my mom around and she says to me "melody, take some money and go across the street and go buy me a pack of cigarettes". I opened up her pocketbook and said "mom, look what you have in your pocketbook!!!!!" There were 28 packs of cigarettes. I know because I counted them!!!!

She said "Oh, okay!!!!" When I put her back in her bed in the room, I went over to one of the psychiatrists on staff and asked if I could have a quick word with him.

I then said "My mother has been a lifelong smoker and she has emphasema, she had dementia for one week and she thought I lived across the street and could just come and visit her. She no longer has dementia but she just asked me to go and buy her cigarettes and she had 28 packs in her bag, HOW COME SHE IS BEHAVING LIKE THIS??

His response: "your mom has nicotine in her brain, it is so addictive, it's too late, there is nothing we can do. She has emphasema, pulmonary, blah blah", He went on to explain the facts of her condition and how the nicotine affected her brain. I said 'nicotine can do that??" and he said "the nicotine they put in cigarettes now is far stronger than 60 years ago when she started to smoke" (Remember this conversation took place 12 years ago).Just imagine what they are putting in cigarettes now!!!!!

I then asked him "If she has emphasema, how then can she draw the smoke into her lungs, I thought when you have emphasema you can't breathe very well, I mean, she's on all these inhalers, and nebulizers, etc."

His response: "When a person wants to smoke, nothing will stop them". "It's so in their brain, they don't know what they are doing".

So how come the tobacco companies are still allowed to hook people???
Politics, money, you name it.

Oh, on my mother's death certificate, it says "Direct Cause of Death, Emphasema, Indirect Cause of Death - Cigarette Smoking.

Now I have saved this certificate and when I am having a conversation with the people around the corner and THEY BRING UP THE FACT "oh, I can't quit, it's too hard", I have whipped out this certificate, HOPING SOMEONE WILL GET A CLUE!!!! Want to know what I always get??? Oh, don't show that to me, it makes me nervous, THEN THEY LIGHT UP!!!!!

I went to a funeral of my friend who died from Stage 4 lung cancer (she never stopped and she died at age 53 and she died 7 days from her diagnosis), that's right, she was diagnosed with Stage 4 on Friday and she died the next Friday after one chemo session. At the funeral parlor, many people (friends of the deceased) went outside and smoked.

Smoking is insidious, poison, and extremely toxic, not only to the idividual but to anyone else in their presence. My landlord has never come in my house with a lit cigarette. He knows better. I have had a smoke free home ALL MY MARRIED LIFE.

I came out of a home with both parent who smoked. All my mom's brothers and sisters smoked. Every weekend, the family would get together and the smoke that filled the house was disgusting.

And in the past (not so much now), but when I was in my 20's (until I got my own apartment at age 24), every single time, a doctor listened to my lungs, he would say "how long have you smoked?" and I would say "I don't smoke" and they would say "Oh your parents, right??" and I would say "yeah, why". and they would always say "you have the lungs of a smoker".

I have to remember to ask Dr. Fred the next time he listens to my lungs if I still have the lungs of a smoker.

Melody

Hi Melody:

Thanks for all that very interesting information about smoking and especially what it does to the brain. I had never heard or read that before and am glad to know it.

I have never smoked, neither did my husband. His death was caused by pneumonia and post polio syndrome. He was almost 85.

My father died of stomach cancer at age 49 - he smoked like a chimney. My mother died about age 59 and was remarried to a chain smoker. He later died of colon cancer in his 80s. My mother died of bladder cancer. It is no wonder that I never started smoking! I am now almost 78 and have healthy lungs.

I tried one cigarette about age 9 and thought it was awful. Ugh. I also did a lot of singing and wouldn't dream of damaging my voice!

Hope things go well with you and Alan.

Shirley H.