OT October Chit Chat

[Jeanie Z]

:) Hi all. I thought things were supposed to happen in threes. I can't even count all the things I have dealt with this month. Today the mobility place called me and they got the $1500. part for my ramp system. They charge $110. per hour for labor.

I got there at one and at four thirty they told me I would have to bring the van there one morning and leave it for the day. I had paid $600. deposit last week when they ordered the part. They had fixed it where the door would close but it no longer will kneel down. Also the key remote does not work it.

They said they are going to have to call the company for instructions since it is an older model. The girl said since they had told me two hours labor they could not charge me for more. Also I do not have to pay anything until it is fixed right. I found out it is worse than when I got there.

When I got to my first stop after leaving there, the ramp went out fine. Then it would only work with the key in the door lock. And it would only go 4 inches and stop, then twist the key again and another 4 inches 6 times to close it. I am praying they can get the info they need to fix it right. Andy will take me there next Friday AM. I am grateful I have Visa and some of my retirement savings still.

They insisted the newer models are easier to fix since they have computers. Mine is 17 years old but only 126000 miles on it. There is one other mobility place but they are much more expensive and not very nice to deal with unless you want to buy a new ramp van. I hope nothing else goes kaput, I am at my wit's end. I am glad I can come here and vent. Thanks all of you. Jeanie :)

[Howie]

Jeanie, that's plenty to vent about, so feel free to vent to us anytime. That's what a support group is all about. I hope they can get things fixed to your satisfaction soon.

[agate]

Jeanie, your whole transportation system is this arrangement, isn't it? I don't suppose the MS Society or the MS Foundation could be of help? It wouldn't hurt to ask. With an emphasis on how long you've had MS.

[stillstANNding]

That's a great idea, Agate.
ANN

[agate]

Thanks, ANN. There are times when we may have to swallow some pride and just admit that MS has depleted our resources and we could use some help.

These organizations are there for us. They may seem to be putting all of their energy into fundraising and into supporting research projects but quite often they have ways of finding equipment that we might need or the funding for it.

Some chapters of the MS Society are much better about patient services than others.

[Earth Mother 2 Angels]

Virginia, the instructions for Fosamax warn you not to lie down for 30 minutes after taking it. I always thought that had something to do with some weird effect on the esophagus but this doctor says it's only because some people have trouble swallowing the pill and if you lie down soon after taking it, you might choke on it. She says that's true of many large pills.

((((((agate)))))) ~

You are correct, and your doctor is incorrect about the reason why you shouldn't lie down for 30-60 minutes after taking Fosamax. Esophageal erosion (and even cancer) is a major side effect of this drug:

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A dear friend of mine has permanent esophageal damage from taking Fosamax. Another friend has had numerous cases of jaw necrosis. Another friend fractured her wrist while taking Fosamax, when her dog pulled on its leash.

It doesn't strengthen the bone; it coats the bone, but leaves the bone fragile and brittle underneath. It's quite caustic.

Unfortunately, most doctors don't discuss these side effects with patients (who are primarily women ~ menopausal and post-menopausal).

I studied it extensively, when it was suggested for my son. I wouldn't give it to him. And I would never take it for myself.

Love & Light,

Rose

[agate]

Thank you, Rose! I thought I remembered reading somewhere about that more serious reason for the instructions about taking Fosamax.

The doctor went into the jaw necrosis issue too and blew it away by saying that in her 7 years of practice she'd never seen a case of jaw necrosis related to taking Fosamax. I was underwhelmed by this statement. Seven years isn't so very long, and just how many patients on Fosamax has she had in that time? Not very many, not enough to be significant.

I'm very reluctant to take any drug that hasn't been around for a long time, and I seem to recall when Fosamax came on the market. That's not my idea of a drug that's been around for a long time even though I'm getting on in years.

No, she didn't sell me on the Fosamax. I'm willing to take my chances on a fractured hip. Her point was that I'm at a 13% risk of a hip fracture, and when I brightened up at hearing how low my risk was, she said it should be around a 3% risk.

I found this 2012 article:

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[stillstANNding]

Howie, guess what?

Mom gives a slice of turkey to her cat, Gypsy, every evening. She said that she bought some sliced turkey that tasted like cardboard. She looked at the label and it was low sodium. Yesterday she bought more - for the cat!

And she doesn't even know about you.
ANN

[Howie]

Ann, I'm just getting up, and both cats have been begging for turkey since I cracked my eyes open. Sam is even perched on my leg as I type. Cats! OKAY, TURKEY TIME!

[agate]

Brazen little hussies, aren't they?

[Howie]

Turkey must make them sleepy like it does people. Seven is on the bed and looks like a car hit her. I'm sure Sam is in the same condition, sacked out somewhere.

[SalpalSally]

(((((Jeanie))))). That all sucks!
Thanks for your card, love you.

[Earth Mother 2 Angels]

((((((agate)))))) ~

I'm glad that you refused the Fosamax. As your linked article indicates, fractures do occur often to people (women), who are taking Fosamax, Boniva or Prolia, the shot given twice a year.

My friend with esophageal damage ended up in the ER years ago, thinking she was having a heart attack. Turned out to be the Fosamax destroying her esophagus.

The doctors of both of my friends, one with jaw necrosis, the other with a fractured wrist (Mother and Daughter actually) denied that Fosamax was the culprit and encouraged them to continue taking it. Mother is 93, and her doctor tried to get her on Prolia. Both of them refused and are using an OTC supplement called Grow Bone.

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The first reason, which I gave to Jon's doctors for refusing Fosamax, is that Jon cannot stand at all and sitting up straight is impossible for him, with his curved spine and missing left hip (it is dust). He has dysphagia and intestinal motility problems. I'm not exaggerating ~ Fosamax probably would have killed him.

I firmly believe in thoroughly researching every pharmaceutical, OTC med, and supplement prior to taking it. Doctors like to proclaim that side effects are "rare," but if you're the one to get one of those side effects, its frequency of occurrence among others means nothing to you. Other considerations, which doctors may slough off, are underlying medical conditions and interactions with other drugs.

We all need to be our own detectives and researchers to make informed decisions. That's one of the things I love about BT. It's a fabulous resource.

Love & Light,

Rose

[Virginia]

Jeanie, hate that you are having so many transportation problems. Any way you go it seems there will be a tremendous expense. I do hope you can get some help.

I too to do not like the idea of taking Fosamax. I was actually put on it by my then Doctor many years ago - shortly before MS diagnosis. I did exactly as told to do as far as taking it and not lying down. Actually, I was still working at the time. Anyway, it started causing me to have pain in the esophagus area and he told me to stop.

Agate, what I was talking about being asked to take was another pneumonia shot. I thought you said your Doctor said there was a new one, so I figured I would be hit with the question about taking it.

Ann, how's your Mom doing?

[stillstANNding]

We saw Mom's cardiologist yesterday. Her vitals, blood work, EKG, defibrillator, and physical exam were all OK. I was happy for all of that.

He thought the 40 mg of Lasix she had recently been put on was drying her out and lowered her to 20mg. He also said to watch the sodium. She said, "I'm 91, something has to kill me and I am going to eat anything I want." He didn't disagree.

Thanks for asking,
ANN