morgan617

I remember now it made me really really cranky too...I had forgotten that one. It was a personality change even the hubs noticed, so it must have been profound...LOL....morgan

Don't make me come there with my can of whip butt and beat those fevers out of you....your fish bowl needs cool Atlantic, not warm Pacific water, to keep you cooled down, girl....prayers and thoughts a comin your way...mamamorgan

We've had FED Blue Cross Blue Shield for many years. We have never had dental and just got limited vision this year, but the medical end has been overall good. No alternative type is covered, but the traditional is good.....morgan

If you are talking about jobst stockings, many insurances will cover them. Also many pharmacies or medical supply facilities will call to make sure your insurance covers them. They want to get paid, so they call for authorization. Depending on what you want to get, most places will know whether they're going to be covered or not. You can also contact your insurance and ask them yourself. Good luck!! morgan

So sorry Pat, you and your family are in my thoughts and prayers! morgan

Stellakitty, sorry if I offended. I was a nurse and have had medical personnel confuse this drug with me, when I was on it. I did not intend to imply you didn't know what was going on. If offense was taken, I am sorry. It made me feel awful, but not with mood swings, just sick. It made my surges worse, actually because of the peaks and valleys it caused. What can be a miracle drug to one person, can certainly be a nightmare to another, and you don't have to have pots for this to happen. Anyway, sorry I upset you....morgan

I very seldom get upper respiratory infections (knock on wood) so I never get the shot, but my son gets one every year. He's on Enbrel, so i don't take any chances. You should never get the shot if you are having any symptoms at the time. It should only be given if you aren't sick (I mean acutely sick with a cold or something) I think it's very much a personal decision. I have always been told that since the virus is dead, it's the preservatives or something else you are reacting to, not the flu part itself. I guess it's like everything else. morgan

Eli, I was really horrified a few years ago, reading about how poorly you were treated by your peers! I have never forgotten that, probably because in my years of nursing, it was, for the most part, such a good old boys club, with the doctors being such a close knit, protect each other community , at the cost of the patients at times. I realized if doctors were being treated that badly, by their peers, we really can't be surprised at how the lay person is treated. Disappointed, but not surprised. I have since seen my very brilliant, well respected internist being treated as poorly as you have been, but for trying to help me! Many doors slammed in his face. I don't ever push him anymore to get me into specialists, because he really can't get any further than me. So the times, they are a changing. We can only hope that as time goes by, more doctors will be more willing to look at the "bigger pictures." I have also realized that all my anger at doctors and others does, is make me sicker. It's just not worth it. I still have my share of "moments", but am working on it... morgan

Becca, I am a reactionary person and have said and done things in frustration I am not proud of. It doesn't mean I didn't mean it....it just wasn't the best thing to do. I suggest you send the Prof a note explaining that this illness is taking it's toll emotionally, and you reacted badly to these people. My guess is, he is aware that this illness affects our moods a great deal and will have more understanding than you think. Since they won't take your calls, you can send a short note to the mental health place and just apologize that way. If you aren't ever seeing these people again, in the long run, it really won't matter, but they should appreciate the effort you have made. I can't imagine that any mental health person would think you wouldn't need help learning to cope with a chronic disabling illness. I don't live in the UK, however and have no idea how they think. You can't undo what has happened, but the best you can do is own up to any part you had in it. Not to anything they've done, just your part. Send it certified, so Prof Mathias can see you did make an effort to make amends. Good luck, and I hope your hand feels better soon. morgan

I'm really happy you are feeling better Pat! Now, if I could just find a little bitty job I could actually do, maybe my stress would lessen. The hubs is not getting any overtime, and unfortunately, we sometimes come to depend on transient things. We just can't think of a single job I can do..but I'm glad you did!

Oh not at all Jennifer! I totally agree with you! I wasn't offended at all, I was just saying that if you don't know know or understand there are other reasons for our body acting hypovolemic, that's where it's going to go. I totally agree with the psych part too. I wish doctors that don't understand would just admit it, as opposed to becoming psychiatrists in a heart beat! After having been a nurse forever, I know we can be guilty of judging people, so I can't be offended by the truth. My only defense is, when a doctor has years more study than a nurse and doesn't get it, we can't really expect a nurse to. Although I used to study things I didn't get and did butt heads more than once with them...(I also got into trouble for it) Thanks for being concerned, but there wasn't any problem.....

Sending thoughts and prayers your way for a quick recovery Amy! morgan

In most people that are normally healthy, it is nursing or doctoring 101, to have an increased heart rate and lowered BP from dehydration, low volume, whatever, caused by fluid loss, for whatever reason. In my whole 30 years, we saw one patient that I have since realized had POTS, and she had every test known to man and was sent home after several days with the typical psych diagnosis. She saw at least 5 different specialists and not one of them had a clue. This was about 15-17 years ago. I never forgot her, because I just knew there was something physical wrong, just no clue what it was. The majority of people, in the health field, have absolutely no idea what autonomic dysfunctions are, but do understand the basics of low fluid volume and the symptoms. Nursing or doctoring 101 is simplistic, but when you take into account, that 99.9% of their experience of people with orthostatic tachy or bp drops is with fluid loss, it's not surprising that this is what you will get as a diagnosis. As a rule, we didn't go running into rooms and terrifying patients when their rates jumped up, unless it was V-Tach, and then they were usually not responsive. As time goes by and hopefully more comes out on this, my hope is, the medical community will not jump to conclusions that it's just a matter of low volume. In paradise, all doctors would know what to do and get beyond the basics, and they have far more training than nurses. Until then, it will mostly remain a matter of 101. I saw a nephrologist that said my body had low volume, even though the tests he did, didn't show it. But refused to write notes to that effect. He was worried what his peers would think of it. Jennifer, I've had more than one doctor become an instant psychiatrist, with my therapist getting very irritated by this. She stays out of their fields and expects the same from them. I'm not saying this condition is nursing 101, it is far more complicated, I am saying that's what almost all doctors or nurses will say the problem is, with those particular symptoms, because they have no clue what else it could be. I would guess the doctor that got this thread started with his very quick diagnosis was thinking the same thing most other doctors uninformed about OI do. And I am guessing that's what K meant and I agreed with her. This just comes from personal experience....morgan

Angie, are you sure it wasn't klonipin your son was given? I was given that many years ago for a reaction to a drug that made me have seizures. I couldn't even function. I know a lot of people use very tiny amounts w/o any problems, but it isn't too great for others. A lot of people confuse these two drugs, because the names are so similar. As far as clonidine, I just never got use to it. The pills caused peaks and valleys and I had a horrible skin reaction to the patch, and it was too strong anyway. I can't believe how some can do so well on a drug and others just can't take it....morgan

I agree K., It's pretty much nursing 101, that if someone stands and gets tachy, they are dehydrated and/or have a low volume. I would have been far more impressed if he had said, "and it's caused by this and that, and this is how it's fixed." And it worked.....It's called orthostatic checks and I did them a million times. I once had someone look in my eyes and tell me I was full of poo....most of the time I don't need anyone to look at my eyes to tell me that....

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I kind of see it as give and take. If I find something that I think is worth looking into, I make sure I have worked with him/her on their suggestions too. I would think that if you are willing to try what the doctor has requested, they shouldn't be put off by any suggestions you have. If you are unwilling to try anything they recommend, I could see how they could become frustrated, otherwise, they should be willing to listen to your input also. K is correct, it should be a partnership. My pcp is more than willing to admit I know more than he does, but it takes a very confident doctor to admit that. My MDA doctor is not like that, but I have found the more willing I am to try her things, the more willing she is to listen to my ideas. Kinda like marriage...

I'm not sure I would classify all types of OI as "benign" I don't think greatly fluctuating heart rates and BP's over a period of time can be very good for you either. It has certainly taken it's toll on my body. I think you can have varying degrees, for instance, it doesn't affect your life much, to being totally debilitating. I'm not sure I think OI has been researched long enough for anyone to say with complete 100% assurance, it is "benign" and not life threatening. I believe it's a bit premature for that type of blanket statement, if it has been made. I don't know if it has, as I haven't seen any experts myself, or anyone that has said that to me, and haven't read much literature in awhile. Straight hypertension is called the silent killer. It is typically insidious and has no real symptoms, until something happens...ie: stroke, heart attack, whatever. But you will seldom, if ever hear a doctor say "your HTN is "benign." There are degrees of HTN too. Mild, moderate, severe, and malignant. Malignant is associated with cancer, but also out of control BP's, like those with Pheo. However, any type of HTN is always taken very seriously by any doctor worth his salt. I agree one of the biggest problems here is the interchangeability of words (is that a word?) For instance, because my paralysis was used interchangeably with my syncope, the PP doctors found my charts to be very confusing. Which was it, syncope or paralysis...when it was both, they were just used indiscriminitely (sp). My doctor does not consider my ans problems to be "benign." But I am not sure other people have doctors that feel that way. You know how they say, everything in moderation? Well, there's nothing moderate about a Bp going from 110/60 to 220/130 and a pulse going from 60 to 130 in a couple of minutes. So I do not think of this illness in terms of benign or malignant. There are too many variables with people. I think OI of any type should be treated with the same respect as any type of HTN. morgan

I would agree if you tend to be prone to headaches, you are probably going to be more prone to one after the puncture. I am honestly surprised at the number of people on here who had such severe problems with these. Since I worked in hospitals, all the punctures I assisted with were on inpatients, and as I said, I can only remember one getting a headache. I could have gotten straight up and gone home also. In fact, I was home within a couple hours of mine. (The staff thought I was discharged, sent me home, called me back and said oops, brought me back in, he did the puncture, I stayed an hour or so, then went back home) These people were also compromised in some way, or they wouldn't have been there, but no one ever had problems, even ones that were sitting up for the puncture itself. (in some cases, it's easier to do it that way, obesity, lung disease, etc) The worst problem I had was the reaction to the adhesive on the bandaid, and the pain of getting home and having to go back. But snafus happen...morgan

Well, according to this, mine is 47. No one says or does anything about it, so I don't know what to tell you. If it makes that much of a difference, I guess it's a good reason for me to be feeling as awful as I have. I'm sorry I can't help you. What was your creatinine and were you dehydrated when it was drawn? I don't like not getting my labs, but sometimes I think it's better to wait till you can discuss it with your doctor, as there are so many variables with so many labs. Here, you can't get your labs till the doctor has signed them off, so you can ask what's up...hope it's nothing serious...morgan

I'm sorry sweet pea....There are so many causes for fatigue. It could be something as simple as low B12, or so many other things. I know you've been down for the count for awhile now. Hopefully they will come up with some answers. Fatigue has been one of my biggest killers for a very long time, so even though I can't give any advice, I can certainly empathize....and venting is not a no no here. If we didn't have outlets somewhere, we'd all explode, or implode, I think....morgan

Potassium comes in a liquid form, effervescent or just a liquid. You mix it with juice or water. It peaks faster and drops faster, but is effective. The pills that are coming out are being absorbed. All that is coming out is the shell, you have absorbed the potassium. Some pill shells are like that to make the med easier on your gut. The medicine is absorbed through the pill and then the outer shell passes on through. Klor Con (big orange potassium pills) are made that way. If you have the capsules that are filled with the little white beads, you can pour them on pudding or ice cream or something to take them, but do not chew them. I found that very difficult as they go all over your mouth. So I take a bite of pudding or baby food put the pill in and swallow. The powder and effervescent is not very pleasant tasting, but if you are worried, ask your doctor about them. Good luck....morgan

I've had them and helped with a zillion of them. Mine was like nothing. They had me lie flat for a couple hours, it didn't really hurt at all, and I couldn't tell they'd done anything. I've helped with probably a few dozen of them and think I had about 2 people that got a headache. Just remember, it is far more likely to be simple than it is to be a horror story. The hardest part for me was to stay curled in a ball. Some people are more comfortable sitting up, leaning over a table, and they still don't get a headache. The side effects are very rare, and though they do happen, the chances are far greater you will be just fine. Good luck sweetie....morgan

I read this article awhile ago. I found it very interesting. After 30 years of working in the health care field, I know there is a fair amount of friction between many "traditional" and "holistic" practitioners. I thought the same thing you did DG, as did my doctor. He is very much a believer in Fibro, so I am fortunate in that regard, but I don't even tell other doctors I have it. I wondered why he was so vague, but my thoughts were, he must have a book or online stuff. Not that I don't think he's pretty spot on, just that he was so vague about remedies. Holistic and traditional medicine is like these bizarre illnesses. They have a long way to go before they come together. So, as much sense as he makes on much of this, I would have to wonder how many doctors would be open to his treatments, if he had listed them. I have a very open and liberal doctor, but even he is a bit hesitant about holistic approaches. Like everything else, we have a ways to go on this front. morgan

I was going to mention gout too, but it usually hits the toe or elbows. It sounds like some kind of inflammatory response to something. I've had this happen a few times, but it has always just resolved itself. I have no idea what it is. The pain tends to stay after the swelling goes down though...unfortunately. Hope it gets better soon! morgan