Miriam Poorman-Knox

Nina, I went to the beach and prayed for all of you. This is a familys pain. You really love your dad. I am dlad you have been able to be there with and for hm.. you are a daughter he has to be proud of. I wish you some peace.... Miriam

Sounds like you are navigating the system pretty well.!!!! Yeah You. I am surviving mr two grandsons in Hawaii. No trips to ER yeah me !!!

Hey Linda, With Addisons all bets are different. You need to find out the parallels and differences between the two. There are paralels and that will help with the medication. BTW I always call the prescribing doctor especially if he is a keeper when i have questions about a prescription. It ends needless suffering earlier (hopefully) how is hubby. Miriam

I love that soup. I think depending on your condition, it might mess with you. I eat it when I am potsing bad and w/much salt added does the trick. Although, since my surgery in Nov. for a bowel obstruction I am extremely limited in what kind I can have. M

EM you are the sage. Thank You this is such an important analogy. If I were the tatoo type that would be appropriate. M

Is it possible to have a "conference with larry and moe"?? Even a conference call where you were present might help. Take dh with you. I am in Hawaii caring for 2 roudy grandchildren. I don't get to check the forum much and its a six hour time difference 6 hours earlier. I think that should be a real opportunity, but this does happen often. Good luck Miriam

Is it possible to have a "conference with larry and moe"?? Even a conference call where you were present might help. Take dh with you. I am in Hawaii caring for 2 roudy grandchildren. I don't get to check the forum much and its a six hour time difference 6 hours earlier. I think that should be a real opportunity, but this does happen often. Good luck Miriam

They could also be related to an aura of migrane headaches. Just a thought Miriam

Gently, respectfully I ask that this thread stick to the subject. It is very difficult when there are other issues in the mix. I think that when we demonize all healthcare providers with horror stories that those including myself find it upsetting. As with dysautonomia it is difficult to find a knowledgeable practioner. So with psychiatrists it is equally difficult in many cases. And I say it loud===its difficult to deal with this syndrome and not be depressed, not medication depressed. Thanks Miriam

Since jajae wrote, I see that this has become a dump zone,WHICH is fine except not always helppful. When I wrote that my doctor said that of course I was depressed. Having this at my age would be depressing. It is so important to realize that there are "mickey mouse" doctors out there. however, there are good ones. Truth is anxiety and depression do not cause your BP to drop to our levels. When doing research it might be wise to take the list of contra indicated drugs with you. Again autonomic dysfunction can trigger other things, and another diagnosis. Hopefully temporary. Don't stay with a doctor you don't think respects what they don't know and that you know some. I am not ashamed or weary of seeing my psychiatrist. It is a tool. He is awesome. He might not know all about oa, but helps me to cope and will do a check to see what meds are ok to take with this and what maybe not and change. Jayje, in psychiatry as well as other fields there are some deliniation paths. So as oi is a syndrome there are also some syndromes which iwhen looked at can show something that is helpful. Syndromes. If you want to pm me I can be more articulate. I a in Hawaii, and there is a 6 hr. difference from eastern time. M

You are awesome.!!!!! To have been able to speak to the cardiac person, took incredible strength. There is no good answer as to why. Except that there are sick ones all over. We are just in the middle of a very similar trial in Pittsburgh where an oral surgeon sexually assaulted MANY patients. I want to add my 11/2 cents about you're posting here. Perverts like that can get lawyers that are scum-bags and they're only "job" as they see it is to get this hemorrhoid off. Who is in the middle matters not to them. I suggest keeping a separate journal apart from anything posted here. Then if you do have to testify, you can refresh your memories with that document. And what is here is a tiny piece of your testimony. I hope you are able to maintain with this added anxiety/ abuse. We are here. This is an extended family to me. And I think to all. Keep us posted as appropriate. You can p.m. anytime. M

I would contact your university. There are tons of people going to school with disabilities. You may even qualify for some grant money. You can go to school while on disability. Check the Federal website. Don't know which agency but there is a list. Good luck and good for you. I think its great to be moving in that direction. Miriam

Dr. Low says that most people DON'T pass out. So that is a "myth" remember it is a syndrome. many, many things

First a cooling vest might help. Sporting goods stores have them. Otherwise might I suggest going on line (I am on Hawaii time) there are websites for veterans, families of deployed....... Perhaps that could be your contribution. Have your friends bring you food. I have done this on many memorial days. M

Fabulous I don't know why I didn't think of that. My only caution about neurontin which I take mega doses of is "your knee problem is still your knee problem" Kudos trooper you are right on top of this/. M

An interesting point would be to check pulse ox to see what that is before, during and after. M

Well FOR YOU I think its a good idea. Your body has been a punching bag of sorts and this may just be what you need to calm things down. My only personal rant about the zpack is its cost. It is outrageously expensive. Steroids are dirt cheap (as meds go) so if you are good at remembering to take them I would ask for a script for the # you need. Thats my rant. The z-pack is really east on the other hand. Let me know if it works. Miriam

I don't see what meds you are on. If you lost weight and are on certain medications it absolutely will affect your HR. I would peruse that first. M

O.K. I promise I will quit after this. To those of us that are more "mature" (old). There was a t.v. show and as it opened there were 4 people who would say MY name is miriam poorman-knox the next one would say my name is Miriam Poorman-knox the next would say my name is Miriam Poormaan-Knox and the celebretied could ask questions and decide which they rhought was the real one. Your post makes me think we should have a link : MY DOCTOR IS AN IDIOT, then someone else says no really MY DOCTOR IS AN IDIOT......... You get it. Oh well thats all. M

Couple points if you are married or getting a divorce and you have been mainly a stay at home worker, you may certainly qualify under your husbands benefits. Also if you are divorced and don't have the credits again you can use his credits. Even if it has been over 10 years. Search, google and ask questions. If I am not clear let me know. Miriam

Stupid question, but did you google this? There is a wonderful site. they say its not disabling and glasses and eye drops (you do have them right) Will make your reading etc. work better. I have crappy eyes. I had ARDS and was on life support for almost 3 weeks 5 years ago and it reactivated a dormant virus which spread to both eyes. Did he do a mri or cat scan? Miriam

I am not a Doctor, but am a trained rehab spec. The thing with the injections and I am just giving this FYI, is the will get all the areas...joint cavities. Did you say your doc wants to use steroids z-pac? Sometimes this helps your body. Because of your injury I would maybe see what other steroid treatment he/she/it would try? Otherwise I/we? don't usually use steroids. When your injured that goes down the drain. Its important to stop "the madness" pain. In the pool all you want to do is slowly begin to walk forward backwards and side to side. This helps stabilize muscles in knee, so they can support the knee itself. Good luck, ALOHA Miriam

I tried to think that mine was from something else. It is neuropathy. I also have it in lower legs and feet. I take neurontin. It is good most of the time. The only way to know if this is it is EMG. Miriam

They don't use those drops anymore. Take sunglasses, or ask for a pair. You might get dry eye after being dialated. Ask for a sample of eye drops (no preservatives) and use them the next couple days. It helps. I unfortunately am a frequent flier, everyone knows my name at the eye hospital. Good luck Miriam

The bullet of which I speak is the injections... You won't have this luxury. But I had my shoulder injected but he didn't tell me there were 3 inj. So I puked all over him and the P.T. that sees patients with him. Your body has been through so much and it is hard sometimes to realize that more doctors won't help. I am proud of you for being so persistent. Its so hard, as we all know to fight this. I worry that soon the dysautonomia will kick your butt. And then you wont be able to be as active. Please try the pool. Miriam