Miriam Poorman-Knox

Sun NOTE TO SELF:::::::When I feel like this I need IV Like Cookie monster;; Some of us have scripts from our docs so we can get IV's when our BP is low, and darlin if your layin on the kitchen floor chances are you need fluids. Take the list of symptoms and (to cheer your self up) say You might be having an autonomic storm if--you want to puke and have nothing to You MIGHT be having an autonomic storm--IF you are lying down and feel like you need to lye down Jeff Foxworthy always makes me laugh so I talk to my husband like this, when I am storming or pots holing...... The other thing , call the medical society and ask for the name of someone who deals with dysautonomias.. And, the best thing I have is a therapist. He only sees people with medical problems,he calls and checks, gives adarn. When I get frustrated or depressed, he is there. It is a gift to yourself. I am a minister/chaplain and I hope you don't think of this as a weakness, its empowerment!!!! Peace, Rest and Blessings Miriam

Mother Earth is right this seems to be pots in a box!!!!! Carbs can make us nauseaTED BECAUSE SOME OF US POOL BLOOD IN OUR STOMACHES AND CAUSE IBS. As for your Drs... be patient with me I have been married to a FP since he started medical school in 1975. He has for almost 20 years been teaching residents. Pots is an autonomic nervous system disorder, so lots of different diagnosises. I had 12 prior to being diagnosed, and I had the best doctors available. My husband opined that it was some sort of autonomic problem but he didn't know of pots. Remember doctors are not one size fits all. If you can't feel that there is mutual respect then its time too look for someone else. I got diagnosed after fainting in a hospital parking lot 200 miles away. My mom was in hospital. I was unconsious in the parking lot for 3hrs until someone noticed me from their office on the 2nd floor. I was still out for 3 more hrs after, while getting cat scans, IV's etc.....They said I was dehydrated. I knew that I drank 4liters that morn, so after passing out at my in laws until I could travel. I was admitted when I returned and had every test possible. I was in a week. One morning my husbands colleague came to have coffee and visit. I talked to him about what was happening, and he said that sounds like------a doc who had to retire because of this, and to see Adreanna. When my pcp came and couldn't find anything or discharge me I told her about AD, That day I hat the tilt a whirl and was diagnosed. The moral of this the longest message I've ever typed????? For 27 years I have had pots since my first child was born. Been to tons of docs,,,,,tests too many to count. Moral a pcp diagnosed me, and is now having this a part of training for all residents. Your cardologist is probably part of an HMO and paid by the #### and answering your e-mails etc. takes away from "production". I think you should sit down with your cardiologist and ask if he/she care enough to learn about if not who to recommend. Remember cardiac problems are a part of our disease. If your doc is willing then set up a regular every 4-6 week appt. schedule until things smooth out. Meanwhile keep looking for another doc. PS usually health service docs the first choice, but can care for the unexpected. SORRY SO LONg Miriam

I'm SMOKEd!!!!!!!!!!!!!!!!!!! See if there are patient advocates there. I would also contact the medical society there whatever the equivalent is. Additionally I would file a formal complaint with the director of the residency program the resident was from. Certainly NOT ereading the file is inappropriate, the care unprofessional, uncaring. Also the resident came with a preconceived diagnosis. I do know that a committee will recview this. We are going to the program directors meeting this year and the Canadian residency program directors come. In precious discussions, I do know that they must follow this process, and this will be in the residents and whomever else resp. file.I am so so sorry. Miriam

I hate to think this way, however given the situation you described, I would have an attorney write a letter and have a chat with them. You need to protect your reputation. You should also negotiate a settlement to leave. And offer that you prefer to work, given the circumstances, this is a viable option. Just a thought. Also get someone professional to talk with, this is a gift to yourself!!!!!!!Miriam

Its like ADHD only for people with dysautonomias!!!!! That is why ritalin is one of the approved drugs for us. I used to be a shop till you drop girl, knowsince I don't "drop". I really only can do early bookstores or mall before people come. Miriam

My BP was 40/20 for 6 hrs. before I was first diagnosed. I passed out in a hospital parking lot, and no one found me for 3 hrs. After someone saw me from her second floor office I was still unconsious for 3+hrs more. I passed out alot after that. This was 1 year ago march. The only thing that helped was florinef. I tale 1 a day. Tried more but can't handle extra. But the one with another cardiac .......helps and I don't kiss the pavement any more. Be brave buckaroo!!!!! We are all so different yet so alike aren't we? Good luck.Miriam

They do everything except tell you your mothers maiden name!!!!!!! First start the appeal process with your ins. co. I missed 3 appts. at mayo waiting for approval. You need a Dr. who has a sec'y who will keep answering and calling your ins. co. To get into Mayo , if your Doctor sends a letter and your medical records, Dr. low will review and let you know if he accepts you. Then they call with an appt, mine was in less than 1 month. Peace Miriam

Hi and welcome, I would suggest to them that they do orthostatic blood pressures. This done over a week or even a few days will give info. The tilt table is they say the "gold standard" in diagnosing dysautonomias. I had a lst of diagnosises of 14 after tilt was 3. Problem is if you don't kiss the pavement(pass out) it takes longer yet to diagnose. Also people with dysautonomias often break out in sweat when having a bm, it is exercise for us!!!! Go figure. Peace Miriam

Another organization I help is ARDS. They are doing the magnetic ribbons,or whatever to put on cars. I'll help. Miriam

Hi, The fact that you felt this cardiologist understands us, is good. Quite frankly many people with chronic illneses are depressed. When I got diagnosed with heart failure I put out the word that I needed someone to talk to. Finally I was referred to a wonderful psychotherapist who specializes in persons with medical problems. If you dont call him, he checks in with you. I f I need meds he has a psychiatrist to consult. I think of it as a treat, somebody JUST FOR ME!!!!!!! I urge you to try, interview if you will, and find one that you feel safe with. Miriam Sounds like you are on a good road, and midrodine worked after a couple weeks with sodium.

Thank you and Fyi my therapist is ON CALL!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Miriam

KICK BUTT,. This is great. Sometimes things do fall into place, I'll be prayin till I hear that you back. Here is your door opening, lets see how far. Blessings and a safe trip Miriam

Karyn, Dude why don't you focus on pots????? Dr. Low is a neurologist and since both cardiology and neurologists treat pots it could be a great endeavor. My husband is a doc and has had to learn about this from my condition. You could do this c/ no call.my address if you wantmiriam15221@yahoo.com. My husband is an assist. res. dir and assist dir for faculty development. I am inspired by your story. Have fun at the conference...... Miriam

Have you tried the medicine that the dr. prescibed.?????? Your diafnosis is one that is in the family of pots. With pots we drop when we stand, or other variations. It sounds like he might have a clue. I live in Pittsburgh. Dr. Adrianna Selvaggio, nephrologist is avesome. My pcp and her group have 60-70 pots patients Dr. Jeanine Frank at upmc. These are great docs. If you try upmc internal medicine tell them you have some sort of dysautonomia and they will schedule you with a doc. that treats. Good luck. Miriam

My Dr. told me that this is the hallmark of pots. We don't have enough red blood cells and salt to bind with water, that is why we have swelling below our heart. She said this is when I need to take extra sodium and bets blockers to help. Hope this helps. Miriam

Thank you all. I am very close to my oldest brother, he has also been cut out of her life by my brther snd sister. He is awaiting a liver transplant, and is really able to remove himself from the 'drama'. I am allowed to go to the funeral, not to the family visitation 1hr. before. My husband is reworking his schedule to be there with me. I slept till 2 this afternoon and think I'll go back for more!!!!!!! Just seeing your posts brought tears to my eyes, I am grateful for this extended family!!!! Miriam

Here is my thought. We should pick a 2-3 week period and start giving interviews to the local tv stations health reporters. If you have a knowledgable pcp ask them to come too. My husband a dr. not in it for the money unfortunately, has been giving lectures to all the family practice residents, I go along when I can, but opne of the physicians in his clinic has pots and had to retire. We can do newspaper 's. I know at pitt there can be a conserted effort to have grand rounds re:pots. There are about 8 female docs who did a womens health fellowship andKNOW pots. Plus they have a direct line to Dr.rubb. Remember we must use our power, brains anf fight for positive change Ranting Miriam

To make a very hurtful story short. there are 5 children in my family. Dad died young 36 from Ca., Mom found drink. You get the picture mother never home, at bars, 5 kids to care for. She didn't do a good job. My middle brother was always her favorite. When we moved to pgh in 2001 it was to help our aging parents. Help she did need, and knowing the system I helped. There came a point when her demands were too much for me a 3 hr drive 5 days a week a bit much. So my brother decided that he would help her if she had no contact with me, and they moved her and her husband without any of us knowing. She ended up in the hospital and I was told dhe would die. I had the admin. ask if she wanted to see me, she said absolutely. I made arrangements to go during non visiting hours. I arrived and was told that I had to have a guard in the room. Thae admin came and stood outside the door. My brother had been ther right before I arrived. I left and the next thing I know I hear people sayig my name and asking me where I was. I was outside the hospital for three hours in march with no coat, someone saw me from a second floor office, laying near a dumpster, not by my car. I was unconsious 6 hours. I had bruised on my face shoulders and arms. I transfered to a pittsburgh hosp and was diagnosed with pots. This was my first dtime kidneys shut down. I have not been allowed to see my mother in 2 years. She died today. My sister called my mother in law to tell me that the service was thurs. I was not included in the funeral home time. I am so wounded. I know as a minister that I should forgive and understand. It seems that someone could have contacted me. My fear is try as I might that I'll obsess about this and end up in hospital again. I would like to attend I think. I am not sure how to deal with these people. Maybe I am a bad person, i'd like to think not. I have a therapist who is wonderful. Yet I feel that I am truly an orphan(not just from today,I have supported myself and had my own pt sinceI was 15) an orphan with an orphan disease. There needs to be a CAMP FOR US TOO Thanks to all for reading, and also sharing. Miriam

First Briarmom, that was my point, sarcasm. I have 2 grandchildren and a son and daughter in law in Wa state he is in medical school in Seattle. I certainly will follow up on this. We feel that the juvenile arthritis issues are so undertreated socially, spiritually and medically. I will begin my search for this summer. You are a reALlly cool mom. You really understand on such a human level about this, I am glad to have this oportunity to be a small support. Blessings Miriam

Stretching helps us by extending the muscles, ideally afterwarm up. Walking 2-3 min. Some stretches also strengthen our muscles andmove the blood from the lower extremeties. The other thing it does is give the blood a chance to move so we don't get light headed and falll down. Can connect with web site or snail mail my handouts. There are lef, ab exercises and stretching that all can be done in bed, it helps alot. Remember to never hold your breath, and to have smooth movements. Miriam

Brain fart I meant juvenile arthritis foundation. I do know about your sons diagnosis. I have been on the national board for arthurs found. If you need any info I can get or tell toy where to get. Advocates come from all corners. Whwere do you live? The good thing about movies is that you can start and stop them, and move around. My fav is Grumpy old men!!!!!!!!!!!!!!!!!!!!! Peace Miriam

Ernie, The bottom line is thais will improve your quality of life. Its not as if you could or wouls use it 24/7. Perhaps this is waht you should tell you doc.I will do what I have to do, but my quality of life is the most important thing, and to enjoy the world(your town!!!) This is what is necessary. You are a mighty warrior and I know ths will work. Miriam

Morgan, I was thinking that we have whats called "an orphan disease'. The amazing thing about all of this poo that happens is that we do find a way in the meantime. I will pray as always for strength and peace for your family. I also have found that humor any kind sick, cartoons, comedy central, humor helps alot. Perhaps all of you could rent a ovie for each day, that way each can find a piece of floor or furniture and take an emotional break. If there is anything I can do let me know. I am not to good with the dirt, digginf isn't my thing but if I know when I'll find a way to have decaf with you all. Miriam P.S. Has your son been involved with theh juvenile dibetes assoc? They have wonderful programs, camps etc. I worked for them and was a counselor. I can tell ya that lots left with smiles

Speaking as a former exeercise phys, have you tried stopping and stretching? Alot of times there is some problem with the blood flow to the muscles, and stretching helps alot. If that doesn't help let me know, there are other options but this is the first try. Miriam

Purplefocus, My prayers are with you. It is more difficult to deal with this for us because our bodies do their own thing and we cant control that. I would suggest callingyour church if you go to one or call another and ask if they have chaplains that could visit you. We don't try to recruit we try to help people deal with what is on their plate!!!!! I hope you don't try to deal with this alone. Also i your phone booh or at the hospital ask the social worker to help you to connect with someone tht is there for you. I am here in virtual, and if you want to e-mail me thats fine. Remember to keep a smile for each of your loved ones: for the happy times you had together. Peace, love and rest. Miriam