A Gardeners Forum Forums Members History Forum Life 2006 For Future Reference

Hi everyone ~

Just a new thread for you tonight to clarify a few things which I mistakenly thought were already well known.

Think of this information as useful for all as a "Future Reference Guide 101 by Merme", m'kay?

And as always, feel free to jump right in and state your opinions or make suggestions for improvements or ask any questions you please!

First, a bit o' history. Now, now, don't groan... I'm NOT gonna be blowing the dust off mountains of history tomes and making ya wade through wads of irrelevant data. Just a BRIEF history lesson that you can take in with a couple of bites. Ok, here we go then...

When I first got very sick, unexpectedly, in 2001, Nana and I were part of a womens forum. At the time, everyone on that forum I was close with knew I was going up to the hospital for an "overnight check up". When it was discovered how sick I really was, there was no way to let my womens forum friends know the change in my status and it was MONTHS before I was home again!

From May through October of that year, my dear forum palies heard nary a whisper about me. It was a very diffcult time for us all. As soon as I got home again, I started making phone calls and sending letters (my pc had gotten fried in my absence) and re-connected with my friends. And they, still on-line, were able to pass the news of me.

Because of how ill I'd gotten without prior warning and all of the dire consequences that followed, my friends, family, church and I devised a network of information, support and representation that has been in place ever since.

When the hospital where I am always admitted added a feature enabling folks to send "patient greetings" through their web site AND for patients who are well enough to go on-line using the computers in the lounges, I was delighted. I would never have to lose touch with my on-line friends again should I ever have to be in-house for a significant period.

We were ALL very grateful we did the legwork in advance by 2003 when I went into the coma after the amputation and all was hanging in the balance for a very long time.

When I joined here in 2004, and so quickly made so many dear friends, I realized that the GH family should be brought into the information network. At that time, I asked Afgreyparrot if she would be my spokesperson here in any event of.

She agreed with the plan though a bit amazed I wanted her.

So Last year, when I was in-house again, afgrey posted the link and so everyone was able to email me their best wishes directly. Some of you older members might remember that.

It is a good system too. Any email that arrives before 11 AM EST during the week is printed out by volunteers and delivered to the patients rooms. Emails received after 11 AM are held until the next day or the following Monday. If the patient gets discharged meantime, they get mailed to the house.

When I was in the coma in 2003, the nurses kept stacking up all my emails and regular mail, working hard to help me wake up again. When I did, they gave them all to me. There were so many, the nurses and I took turns over several days reading them all as I was able to be awake.

It was somehow marvelous to realize that though I'd been unaware of it, so many people had been caring and praying and wishing the best for my son and I and kept writing to me, even knowing of the coma. I believe it was all that attention and affection that brought me back against all odds. I still have most of those today.

History lesson over. (Is that a sigh of relief I hear from one and all?!)

Now for current and future things...

With my health as fragile as it is, and with all that is coming in the next several weeks, I do NOT want anyone here getting misinformation, being emotionally jerked around, or left out of the loop entirely and forced to wonder what is happening.

So here's the "network" that has already been established for several years and will remain this way....

My sister, Wildwood flower/Nancy, is my only relative here on the forum. More than that, she is a very skillful RN with specialized cardiac certification as well as being the Director of Nurses in her health care facility. Because of those qualifications, she holds my Durable Power of Attorney for Medical Decisions on my behalf and will be the one making final choices as need arises when I can not speak for myself.

Although she does tend to keep her posts short and to the point, unlike our other family member here the information will always be accurate and simply, but factually, stated.

However, Nancy has limited access (and interest) to being on-line and doesn't know very many of you well. And in a crisis, she may be unable to post because of 1) work 2) traveling to Maine or 3) being with the medical team responsible for my care as the situation unfolds.

Because Nancy always has her hands quite full with the emergent situation, afgrey can be relied upon by all for accurate updates as she receives them. Afgrey has the link to the web site where you may send patient greetings as well as my home mailing address should you wish to send a card.

My pal Angel is my local friend who handles all manner of immediate details for me while I am in-house. Feeding the parakeets, collecting my mail, running errands, delivering Maxi wherever he needs to go, etc -- that is, when she is not at work or at my bedside!

A woman at my church was appointed years ago to be my spokesperson there. Her task is to keep our congregation informed as to my status and progress and to try to keep everyone assured that all is being done according to me and my family's wishes. She is skillful at handling highly charged emotional issues with tact and sensitivity.

So that's my network: Wildwood flower and Afgrey, who can be relied upon for factual information even if it is scanty, who are authorized to speak for me here. Angel, my hands and feet when I am otherwise incapacitated. Claire, my congregation's connection.

Oh, and lastly, my Ex and I have legal, shared custody of Maxi. When the child is not with me, he is with his dad being well cared for in spite of my Ex's personal problems.

This is the network that has been in place for several years and you can rely upon it for future events as they arise, m'kay? This is the network I mistakenly assumed was running well during my recent absence and I want you all to know I deeply regret the confusion that ensued when it was disrupted.

Is that a comment I hear in the making?

Merme *insert big earred graemlin here, listening*

You guys are the best, by the way.

Great plan Merme.

For my part, I want to apologize if I caused any confusion when you went to the hospital this time. I had no idea you had such a good plan in effect and if I added to the confusion in any way, I am sorry.

Trissy ~

No apologies necessary, my friend. Someone misled you and kept you misinformed. You are not at fault in any way.

I believe you did your very best during a difficult, confusing time without adequate information. Not to mention, speaking with me while I was in various stages of sedation!

Actually, yours was the only email and Afgrey's was the only card I ever received and it took me quite some time to learn the details of how my well-organized network failed.

I appreciate all you did to try to be of help!

Merme

Thanks for that Merme. Still feel really bad about it all.

As do many of us, Triss.

Hopefully, the affection and attention that is freely shared here on the forum will do much to mend sorry hearts in every corner.

And, now that everyone has a Handy Dandy Easy Reference Guide 101, we can prevent such an occurrence in the future... so that NO ONE ever gets misled, emotionally manipulated, or ill used again!

You ALL are too precious for that!

Merme

Oh, something else I forgot to mention earlier...

many of you already have my home mailing address, phone, and email. You do NOT need anyone else's permission, ever, to contact me. I already gave you that right by sharing the information, m'kay? If I DIDN'T want to hear from you, I would not have told you how to reach me when I'm not on-line!

I have always appreciated every phone call, card, email, package or visit I have received from this forum family and I can't imagine ever becoming ungrateful for your attention and affection although there are times when I am too ill to reply.

Merme

Thank you for clearing that up for ALL of us Merme!!

That's what I was hoping, O you with the spelled-right name!

Oh, and another good contact person in dire times to keep in mind is Melcon6.

She doesn't post much, but I do believe she reads every word others post. And, she doesn't live too far away from me, either.

One time last year she actually came to my rescue when the forum grew alarmed over my sudden disappearance!

I'm not kidding. I lost both my phone and internet connection and had no way to notify anyone that something was wrong with my line. Where I lived then, I couldn't leave our property unless someone came to get me. I had tried to send messages with Maxi out to likely places, but it seemed as though no one took it seriously.

So there I was, an entire day later, in the shower, bawling, asking God to send SOMEBODY to help and in the door came Mel! Calling my name, she sounded alot like Calvary charging over the hill or maybe a Heavenly Host, I'm not sure. But it was the sound of RESCUE!

I hopped out of that shower, threw on some clothes, Mel barrel rolled hysterical little me into her car and drove me to a payphone where she got in touch with the companies involved, telling them to fix the problem ASAP!

Then she ran to the grocery store for me and by the time we got back, my service was restored.

I had been 36 hours unable to communicate with the outside world. Interestingly enough, my FORUM FRIENDS realized something must be going on BEFORE my local friends did! I do not speak with my local friends every single day. But the morning I lost service due to a broken wire at the phone company, the folks in Banter Hall noticed I disappeared without saying bye or giving any explanation and I didn't come back, and didn't come back, and didn't come back. By the next morning, Mel was at my place.

Yay, Mel!

Later, Peppereater sent me an older cell phone to use for 911 calls so that I would always at least be able to contact someone as needed.

Before that ordeal, it had never occurred to me that a wire could break and cut me off like that.

Another good thing about where we live now, though, is we have plenty of neighbors! So all I have to do is stick my nose out the door and someone would come. And if by chance, no one was home in the complex, Maxi and I could leave the premises and get likely help on our own.

Sometimes it can take trial and error to nail down all the details. That's why I am always open to new suggestions and comments.

Merme

What about one of the medic alert buttons Merme?

Do you still have the cell phone? It really is nice to have one JUST in case! I have a pay as you go one..20$ every 3 months!

Speaking of Dave I have not seen him in Quite a while! I thought he fixed his computer problems!

Yes, we do still have the cell phone Dave sent us after that mess. And, Maxi will be getting the special kids phone soon -- although I can't remember the name of it right at the moment.

Before that incident, I alwyas said "what do I need a cell phone for? I rarely leave my house, and when I DO go out, everywhere I go has plenty of phones."

Wow, was I surprised.

I haven't seen Peppereater in a long time, either, and I miss him.

Merme

Cell Phones are NICE to have!! You never know when you will need it! If you are out and Maxi Gets ill at school...ect...

And if something was to happen... I am a few hours away, and I have the directions to your house as well now..(depending on how fast I drive!)

Thank you Merme for clarifying everything. You are in my thoughts more often that you know.

Would you be willing to help us understand just a little of your health problems?

If you don't want you I understand completely, my wife has MS and her son has been an Insulin Dependent Diabetic since he was 4 1/2.

I am going through some of the same things.

My wife fell on day and spent 5 or 6 hours on the floor, I finally had to call EMS to help me get her up and into bed. I have considered buying her a 'Life Alert' to wear.

It can be very scary when you confined to your own little world with limited ways to get out. I do most of the shopping, if the wife goes she drives the little scooter in the store.

I do all the cooking, and most of the cleaning. If she didn't have me around I don't know want she would do.

Also I hadn't thought about the old Cell Phone we both have Cell Phones, so I didn't think about that.

Just please take care of yourself!!!!

thank you merme for the clarification.

Pat ~ O, I apologize! For some reason I already thought you knew!

Like your wife's son, I have also been an Insulin Dependent Diabetic since I was young and I use an infusion pump for my insulin therapy.

Even with aggressive treatment, however, I developed a paschel of nasty complications... advanced heart disease, advanced kidney disease, etc. And I am an amputee... lower right leg as of 10/03.

These serious complications are advancing more rapidly than we ever dreamed they would, being propelled by the progression of the diabetes. So we try to always stay a step or two of ahead but it can be a Juggling Act of the First Magnitude when one thing impacts another then another and so on, until the entire domino line starts falling!

Then we certainly are scrambling to get me up and running again.

So far, so good. I've had LOTS more years than anyone ever dreamed I would and it is my goal to make a run for the Gold and see my son raised to his majority. He is 10 now, so fight on we do!

And I'm telling ya, my charming little (yet sometimes unruly) guy keeps me at my tasks when all else seems to fail.

At the moment, I am preparing to begin kidney dialysis, though we hope to put it off for as long as possible.

I am sorry your wife has MS. It must be terribly difficult for you both.

You are welcome, Jiffymouse!

Merme

Merme - thanks for all the clarifications.

I'm glad everything is in order, in case of an emergency, but I'm hoping you don't have to deal with one for a very, very, very, very, VERY long time!!!

I totally agree with Lynne!

Before I married her I didn't know Diabetes was so damaging to your body, she is a RN and repeatedly tells her son of the problems that Diabetes can cause.

Right now he isn't having any real problems with it, but he is young. When she reminds him that impotence is one of the first problems, he starts to listen a little.

I work at a Hospital and I have seen Diabetics come in with nasty looking infections on the feet, and a few days later their leg is gone.

My wife remembers a patient that would come in with Blood Sugar levels of 1500, they would get it under control, and his mother would bring him candy bars for snacks. He was dead at age 35.

I didn't know how important Insulin was until I married her, now I try to watch what I eat, I have a history of Diabetes on both sides of the family.

I know that pricking your finger 2 or 3 times a day can be very painful after a while, but this has to do it to live. He also refuses to wear his Medical Bracelet, if he would ever see what he looks like when his Blood Sugar goes low, it would scare him. I have told him more than once he needs to wear it, the City Police in Tulsa allowed a Diabetic to die, because they didn't know. They thought he was on drugs, or drunk.

It wouldn't hurt to place a note somewhere so EMS will be alerted to your condition, by the door, next to the phone or someplace where it will be seen. I was called down to where he worked because he was almost passed out, and if I hadn't told them he was Diabetic they wouldn't have known.

Please take of yourself, and remember that we will be thinking of you!!!!!

Pat ~ the young can be impervious to warnings because they feel so invincible! "Oh, THAT will never happen to me!" is the standard young person's train of thought.

Fortunately, so much $ has been invested in Research & Development in the last 25 years that anyone diagnosed in recent decades has a MUCH greater chance of living a long and healthy life than those diagnosed before 1980.

The invention of Recombinant DNA human insulin was the first huge step forward. Before then, all diabetics who needed insulin had to rely on pig or cow product and many of us were allergic to it.

In 1983 Eli lily introduced RNA... a real, genuine, human insulin that is massed produced in labs.

Many of my ethical friends strongly objected to my switching over to it, however, because it was all based on genetic research. But because I had a very hard time with the non-human sources of insulin, I switched. And it has made a marvelous difference for me.

Oh, and not to worry -- I have Insulin Dependent practically rubberstamped on my forehead!

I wear a medic alert. I am an insulin pump user. It is a small gizmo that resembles a beeper. I usually clip it to my bra strap and the line is inserted in my midriff. It is always found quickly by medical personnel. AND I am never without my emergency glucagon kit.

Glucogon is a hormone one can inject that causes the liver to dump all it's stash of sugar. Many diabetics carry the emergency kit in a pocket or purse and family members are trained in its use in case the person goes unconsious. Maxi is too young to inject me with it, but he always waves it at the paramedics just in case they can't understand his difficult speech.

Merme

The first time I saw Josh's sugar get low, it really scared the crap out of me.

When we got married he was about 16. We were in bed, and at about Midnight, Josh comes into our bedroom, turns on the light and starts screaming. He looked like he was on some bad drugs and had ODed. I have seen people OD before and that is exactly what it looks like.

The wife knew what was wrong. We both got up, I followed Josh out to the kitchen were he starts knocking everything to the floor. I grab onto him to keep him from hurting himself. The wife gets the shot ready. She stuck him with the needle, Josh jerked and just about broke the needle off in his arm.

The wife had to draw up another shot, this time she was able to inject it. After he started to come around I let go and led him to the couch. She gave him some milk and a peanut and jelly sandwich. After about 15 minutes he asked what happened.

If Josh had seen how he looked with that 'Wild Look' in his eye, it would convince him to wear his bracelet.

Wonder what happened to the cards we sent and wonder where Peppereater is.

Sheri ~ the only items we received were the things sent directly to my address. And Triss forwarded a card for Maxi from Princess Azlea.

Merme

Merme, did you get a card from me to you????

No, Princess. The only card I personally received was from Afgrey ~ she sent it here to my house with stickers enclosed for Maxi.

Merme

peppers Computer monitor broke... He had left a message with Jimmy to let us all know not to worry!
He will be back as soon as it is fixed!