bebe127

I feel for you americaneagle! Doctor's offices seem to be the bain of my existence!! That's part of the reason I only go in to see him twice a year, because I get so stressed with his office staff and wait time.

Joann,

I know what you mean. If I'm not on the phone trying to communicate what the doctor told me, then I'm on the phone to the insurance company trying to fix something the office staff messed up. Seriously, there is no communication in that office! What's worse is, the wife of the doctor is the office manager!! I've tried in the past to call and discuss issues with her and I can never get in touch with her despite the messages I leave with the office staff. She is never available and then doesn't return calls. I'm at my wits end. Thing is though, is that I really like this doctor. He is seriously the only dr. in my area (and I've lived here 20+years) that seems to really care, have a terrific bedside manner, really spends time with patients and listens. I really don't want to lose him as a dr. just because his office staff is a bunch of blithering idiots!! There has never been a time that I've gone to that office without some sort of problem arising later. When I told my husband about it, he just about hit the roof. Everytime he has to take time off work to take me or us for our visits, we lose out on hundreds of dollars. I consider doctors to be my employees, they work for me. I pay them money for a service that they are supposed to provide. I guess if they don't provide a service that is satisfactory to me, then I need to consider going elsewhere. That in and of itself is enough to make me go into a flare as I have really found such a nice fit with this doctor; I just don't fit with the office staff. My husband said, "I guess it's time to look for a new dr." I would love to find a different office staff. It took me 20 years to find a doctor like this one. UGH...

I just don't even know what to do anymore...

Just another rant from yours truly,

I apologize in advance for offending anyone working in the medical field, medical offices or with insurance companies or anyone having to deal with ****** patients like me.

AM I SURROUNDED BY COMPLETE IDIOTS?!?! (And no, I'm not in a mirrored room LOL )

I have been seeing my current GP for a bit over 2 years now. He is the only dr. that even knows about POTS, albeit not much, but at least he is the only one that I have received any bit of help from in terms of treatment. He is a very nice dr. that really seems to care and want to help. His office staff on the other hand is a totally different story. My husband and I both see this dr. I see him twice a year, once for medication renewal and once for a physical. My husband only sees him once a year for a physical. Every time I see this dr. something goes wrong in terms of the office staff.

For instance, last year for our physicals, I made the appt. for us both. Since I don't drive and my husband has to take off work to drive me anyway, we figure why not kill two birds with one stone. Well, last year I called to make the appt.s. I informed them that we were coming in for our yearly physicals that would most certainly require bloodwork. I was assured that the bloodwork could be done in office and to make sure that we fasted from the night before. I made the earliest appt. as we would be fasting...makes sense, right? We go in for our appt. at 8:30am after fasting hoping to get our physicals and our bloodwork done. We waited in the office for 2 hours before being seen. Let me remind everyone that one with POTS doesn't do too well: 1) sitting upright for hours 2) not drinking for many hours. Anywho, we go in for our physicals and we didn't even see the dr., we saw one of his many PA's. Ok, I thought, at this point I didn't care if a dog were seeing me, as long as he could fill out the bloodwork paper. So, with our physicals done (two hours later than our original appt.) we anticipated our bloodwork, which again, we had been assured over the phone that this could be done in office. The lab lady then gave us a paper for a lab company downstairs and said, take this downstairs for your bloodwork. Now, I don't know about any of you all, but in order for us to go through our appointed by insurance lab company, we should really make an appt. first or we'll find ourselves waiting, and waiting and waiting if we were to go in as "walk-ins". Mind you, we are still fasting at this point (it's now about 11:30am) and the dr.s office wants us to go downstairs as a walk-in that could take goodness knows how long to get our blood drawn and I can't reiterate enough that the dr.s office had assured us that we could have our bloodwork done in office. REALLY!!!!!!

At this point I must say that I was about to keel over from fasting and there was no way that we were going to go downstairs and wait any longer. So, I took (rather grabbed) the paperwork after explaining that we had been assured by the office staff that the bloodwork could be done in office and left huffing. We then had to make a beeline for the nearest fast-food establishment so that I could eat and drink before passing out, and then had to go home to make the necessary appt. with the lab. Yes, my husband had to take yet another day off work. Needless, to say that when we finally went in for the bloodwork, the phlebotomist was apparently a newbie and since I was dehydrated from fasting, she couldn't get the blood at first and had to stick me mutiple times in both arms leaving me to look like a complete heroin addict days later.

Now this year rolls around. My husband and I (I never leave home without him) went in to the dr. to get a renewal on my meds. The dr. informed me that our physicals were coming up. I said, yes, we come in during the spring. The dr. then told me that he was going to fill out the paperwork for the labs and to go ahead and get my bloodwork done before coming in for the physical so we could go over the results then. Sounds efficient, right? I told him at the time, with my husband standing next to me that we come in together so my husband would need his paperwork as well. He informed me that all that needed to be done was to call the office and let them know.

Fast forward to today, actually yesterday. I called the office, explained the whole deal to the office girl and she said that she would let the lab girl know and my husband should be able to come by the office to pick up the paperwork so that we can get our bloodwork done before our physicals. I called today to see if they were ready to be picked up and the girl tells me, "we have yours ready, but we don't have one for your husband in his records." I expained the whole excruciating story to her, letting her know what the dr. had said the last time we were in. Her response...I don't know what to tell you, your husband is going to have to make an appt. since the dr. hasn't seen him since last year. I again went over the entire senario and conversation that we had with the dr. last year. To which her response was the same...I don't know what to tell you. By this point, I can feel my blood pressure rising as I (rather rudely, now that I think of it) told her, "You mean to tell me that my husband has to make an appt., pay a co-payment (which we don't owe anyway since the last time they overcharged us because they can't seem to get their **** together with the insurance company, but that is a different story), just to come in to see the dr. face to face so that the dr. can hand over a sheet of freaking paper with the bloodwork orders on them!!??" Again, her reply...I don't know what to tell you. If I'd have been face to face with her, I would've ***** slapped her!

Here's my predicament: I could call the office manager, which happens to be the dr.s wife! Complain to her, only to have her possibly say that because I'm such a biotch they don't want to treat me anymore, thus rendering me in the need of the nearest padded cell, or call and try to get the dr. to call me and waste his time explaining to him what an inept group of people he has working for him. Such a quandry...

Okay, I think I'm done now. I'm going to enjoy a beer with my husband out on our back porch on this beautiful sunny South Florida day and listen to my Tibetan Monks on my Pandora station.

UGH...

Call me crazy, but I've never heard of this test. Is this something you all have taken online? I have no idea what all the letters indicate or what they mean. I would suppose I'm tall and slim, not really considered pale as I love to be by the pool or on the beach, used to dance when I was younger (ballet), and I was not a high achiever until college. Into my adulthood, I realized that I can be a perfectionist at times, have a bit of OCD tendencies (or so I'm told from friends and family), can't stand to have things out of place, and I consider myself to be somewhat creative. If you'd ask my kids, they'd say I'm crazy OCD (really not in the true definition). My daughter too is a high achiever and can't stand to not be perfect at something even on the first try.

Finished my letter! Hope you don't mind ophelialit, I had to use this idea My letter is way too long to put on here, so I put it on my blog. Thanks so much for the great idea!!

Hey Lel,

Thanks! I'm really not even halfway through yet. I probably need to spend more time reading and less time on the computer. Anywho, I do have a list of groups, blogs, articles and books on my blog (below) if you are interested.

Have a great day:)

Bebe

For what's it's worth, I've read that our ANS is what controls our "fight or flight" response. It would sound reasonable to me that because our ANS is so screwed up that our anxiety levels would increase. I know for me, at least, the smallest thing can set me off for days. I was an anxious person before being dx but not to the point of EVER experiencing panic/anxiety attacks. After POTS dx. my anxiety levels are through the roof and I can only control them through meds (Xananx, low dose although I double up if needed) positive self talk and just plain trying to relax. Big Handsome (aka hubby) is a big help and attempts to keep me grounded. I just have to keep telling myself that I can handle it and fortunately I've been able to. I know it is so hard at first, but hopefully you will find your "new normal" and begin to be able to deal with it. POTS just plain *****! Try to keep on keeping on. We have to be our own researchers/advocates. Remember, the doctors work for us, in essence, they are our employees (that's the way I look at it anyhow) and if they aren't doing the job to our/your satisfaction, attempt to find one that will. Never give up!! I truly believe there is someone out there that can help us cope/deal with all this whackiness.

Best wishes to you

misstraci,

I don't have lyme, but there is a woman named Sarah Young who wrote a book called Jesus Today. It is a faith-based book, however she wrote it when she was experiencing chronic illness due to Lyme Disease. Might be worth a look up. She lives in Australia, I believe, however traveled to Arizona (I think) to get treatment. The book was born through her experience. I think there is even a facebook page for her called Jesus Today. Hope it helps and you get answers.

Be well

Bebe

Good on you puppylove!! This is so encouraging May you have many great days ahead as you move toward graduation!!

Blessings,

Bebe

Thanks Amy I'll check into it.

Thanks so much Alex! In your experience, do you think that a GP is capable of ordering these tests, or do I need to discuss it with a cardiologist? Personally, I'd rather do the urine test, I'd just have to make sure no one mistakes it for apple juice or beer

Hey there,

As many of you know, I was diagnosed with "what is probably POTS" a few years ago. That's pretty much where it ended as the dx. dr. only dx's and doesn't treat and couldn't recommend any dr. that did. I currently see a GP who has a few other patients with POTS and am being treated with Metoprolol and Xanax.

That being said, I have been reading a bunch on here about getting NE levels tested. How do I get this done? How is it done? Blood? Urine? Should the dx. dr. have tested for this during my TTT? I'm asking because I think I have hyper POTS (if in fact I have POTS at all) as my bp went up during TTT. I also don't have some of the symptoms that other's with POTS have such as blood pooling, sycope, near sycope, plus I have other symptoms that other's with POTS don't seem to have like tinnitus. I realize that we are all different and present differently. I'm hoping to get into the dr. for a physical and I want to be armed with some questions to ask him as well as maybe suggesting some tests that I should be having in order to better understand what is going on with me.

Thanks for your thoughts.

Be well

Bebe

Lel,

I have had the book for a while and have been trying to read it when I get the time. I have mixed emotions about it at this point. What I'm most interested in is his ideas on nutrition. He says there are four worst food choices: sugar, white flour, processed oils, and milk products. I tend to agree with him, although fully taking out all milk products from my diet seem unlikely at my present stage in the game. He talks a lot (so far as I've read, which isn't all that much) about Americans being overfed but malnourished. I tend to agree with this too. Over the years and with all the new progress and technology while it can help in some areas; I believe it has been a detriment to our food sources, eating and nutrition.

One of the things I don't agree so much with is his opinion that basically says we create our illnesses, directly and indirectly (although I could be reading this wrong, or it's just my perspective). For instance, he doesn't really believe that health can be hereditary. Well, I'll back up to say that I think his opinion is that there are predisposed health issues and health issues that are hereditary, but it is up to us and what we do with and put into our bodies that causes illness. I hope I'm making sense. His premise is that there is only one thing that causes disease and that is bad cells, he calls it cellular malfunction. He claims that we do most of the cell malformation either directly (foods we eat, exercise, etc.) and indirectly (environment). He claims that there are two reasons for cell malfunction; deficiency (again, food) and toxicity (food/environment). He also says that there are six pathways toward never being sick again; they have to do with: nutrition, toxin, psychological, physical, genetic and medical.

He too was sick a while back, almost near death with chronic illness. I can't remember what it was, but do remember him stating that when it all started he felt very fatigued and his dr. told him it was his age, at the time he was in his 40's. So, he took it upon himself (as a trained scientist) to research and study the why's of illness and disease and I think that's where this book came from.

I'm interested in reading more. As far as I'm concerned, I haven't completely discounted anything as of yet however I always read with the thought in mind that I don't necessarily have to agree with every single word. If there is something of value to benefit me and my health or the health of my family, I will try it out. My husband for instance isn't getting on this guy's bandwagon any time soon as he is a believer in predisposition and we are what we are because that's the way we are (if that makes any sense?) not of course to say that my husband doesn't think that we can do more damage to our health by the choices we make.

I think just about anything is worth reading and making our own opinions about them. I am also waiting to get "Fit For Life" in the mail. Can't say I'm going to turn around tomorrow and become a health/exercise nut, but I'm willing to try just about anything at this point.

Best of luck to you

Davecom,

So sorry you are dealing with this, but as angelloz said, you are in the right place. Keep your chin up and keep searching. Hopefully the right dr. is right around the corner for you. I feel much of your pain, but your willingness not to give up and to continue to search is encouraging!! Everyone is different and we all experience different symptoms, but know that you are not alone! You might check out Dr. Diana at Prettyill.com. Best wishes to you!! Keep on keeping on

Sorry, misspelled jargon*! Doesn't this thing have spell check??? As if our brains aren't already in a fog, now I have to worry about spelling too!!

Hope the article is helpful.

weathermandj,

The following article is from the Mayo Clinic and is fairly recent. If you can get past the medical jargin, I found it to be quite helpful. Wish I had had this 4 years ago when I was dx.

http://download.journals.elsevierhealth.com/pdfs/journals/0025-6196/PIIS0025619612008968.pdf

Best of luck,

Bebe

So sorry you are dealing with this. I too have anxiety which increased after POTS. I am on Xanax which, I feel helps me tremendously. At times I have to double up, but my dose is low so it's ok. I try not to double up as much as possible and just try to ride out the wave with laying down, breathing, relaxing, music, singing, praying. I was in therapy for a short while and the only help I really felt I got was when she suggested a book called The Anxiety and Phobia Workbook by Bourne. It really helped me and has bunches of information as well as tips and things to do when anxiety strikes.

I know for me, my anxiety is triggered by many things, leaving the house, having to drive, dealing with emotional stress is a BIG one for me, as well as just plain ol' fear of the unknown. I have found that positive self talk is really helpful for me. There are many affirmations that are found in the book above. I know it might sound simplistic, and you've explained your axiety as being severe and you've tried many things to combat it to no avail. Keep up the search, I'm sure there is an answer for you out there, hopefully right around the corner. Chin up and don't give up

I saw the same video and it got me thinking as well. I only have moons on my thumbs as well, however used to have them on all nails. One thing I have noticed is that I don't wash dishes that much anymore. What does this have to do with anything you ask? Well, my mother always taught me to push my cuticles up when ever I was drying my hands, over the years this has become a habit. Not washing dishes frequently or washing much of anything really, I don't regularly push my cuticles up. Since this discovery, I've been conciously doing this every time I wash my hands and low and behold, my moons are back albeit small. Not in any way discounting Dr. Diana, but just some questioning going on on my part. Also, she talks about ridges in our nails. I have always had these as did my mother and her mother. Who knows? Wish I had some answers for you. Best of luck in your search

cupcakemomma5,

Sorry, don't know of any recipes as of yet, but will continue to check back to see if anyone posts some. I have not as of yet been able to get out of the house to get my NutriBullet; I might just have to order it online. I'm excited. Don't know how you feel about Dr. Oz, but he has recently had shows about clean eating and detox. I have not seen these shows, but heard about them from a friend and I'm sure you can find them online. Also, he had a show featuring Alejandro Junger MD, who is a cardio and also works with detoxifying and clean eating. My friend has been trying his shakes and she says she feels so much better already. She doesn't have POTS, but most certainly has other issues. Wouldn't hurt to do some exploring and research. As with anything, always consult your physician before trying anything

Love it!! Sometimes it can be so cathartic writing our feelings down. I've often thought of doing this myself. Maybe now I will. Thanks for sharing

I thought I'd read somewhere that they can test for MCAS with a 24 hour urine test because the tryptase (sp?) serum sometimes doesn't get results if you are not in an episode. Is this what you are referring to?

boymommy3,

Thank you for your sweet compliment I must remember myself that where there are valleys, there are always peaks. I just have to keep my eyes on the next peak and work toward that!!

What is the Vanderbilt research thing? Money is not the issue with me. I don't drive very often if at all and even then it is just around town and only when absolutely necessary. My husband has become my security blanket (aka American Express Card, if you will), and thus, I don't leave far from home without him!! Problem is his job is very demanding and he is on-call 24/7. Luckily he has some flexability with taking off work, but it is usually for appts. and such around town. And selfishly, when he does get a vacation (albeit, he even works during these), we tend to rather take one with the family instead of having to plan one around a dr.s visit. I know it sounds crazy, and I do want help, it's just that my family suffers enough already with this illness that I just can't bring myself to take a family vacation away from them. Plus, I have no family living nearby that could help out either. I guess I'll just have to be more determined in finding a dr. in my area. I mean for crying out loud, I live near two major metro cities with a great teaching hospital and University. Surely, someone, somewhere has to know something! I guess it's time to get on the horn.

One time however, my GP referred me to a cardio and I looked him up online (as I always do) and found that he had an email. I wrote to him, and his response was basically, I don't know much about that, you'd probably be better off sticking with your original EP (that I saw nearly 4 years ago!). All well and dandy except my dx. EP only dx's, he doesn't treat. So back to square one I saw a neuro a while back the the dx. EP referred me to and all he did was give me what seemed to be sobriety testing in the exam room and then told me that my POTS was not neurologic but cardiologic and sent me right back to the original EP. I feel like I've been going in circles. I must admit though, for the first two years, I was gung ho and seeing a bunch of different dr.s, but none of them seemed to know all that much, therefore couldn't really help. One EP I traveled to see even had the gall to tell me that my POTS was mild because I didn't faint and the result of the whole visit was him telling me I needed to possibly see a shrink.

My GP sounds very similar to yours. He put me on BB and Xanax; he is sweet, although hard to understand (Latin), and he does listen and try to help. I do consider dr.s to be my employee's as well.

Interestingly enough, I recently received a bunch of information in the mail from a new program that my isurance is now offering. It was all this info on POTS as well as names of dr.s in the area. I'm definately going to check them out. I told them I wished they would've had this program 4 years ago when all this started for me!!

Thanks again for your sweet comments It's funny, you know, I find it so easy to be encouraging for others, but have a hard time doing the very same thing with myself. Kinda like when I was little and would love to go to my friend's house and help her clean and organize her room, but I never liked cleaning and organizing my own!!

I might seem helpless at times, but I shall NEVER BE HOPELESS

Blessings to you,

Bebe

I like to scrapbook, but rarely have the energy. I really like the idea of art journaling and am definately going to look into that. I also blog, but many times I just can't find the time to do that either. I homeschool my two teens, so my day consists of Algebra II, Geometry, French I, Spanish I lessons and anything else they need help or guidance on as well as taking daughter to college class and volunteering. I also teach a few weeks out of the year through our homeschool co-op and I spend many hours researching and creating my own curriculum for that. This spring, I taught a poetry class to 5/6 graders. Next spring I will be teaching an art appreciation class for the high schoolers. I like the researching and planning part the best, but it takes hundreds of hours to put it all together, so I usually start a year in advance.

Thanks for adding this topic. Some really great ideas on here!!

Thanks looneymom,

We can grill out and we do grill in the house as well. I would be satisfied with just some grilled meat and a salad most nights. Hubs enjoys cooking and trying new things, so I certainly don't want to discourge him We do a lot of homemade soups as well.

Thanks again,

Be well

Bebe

Thanks Katybug,

All good suggestions, now if I only felt like eating!! Hubs does try to put veg in just about everything he makes, last night was spinich lasagna, YUM! I can only eat about 1/4 of what I used to be able to though. I'm definately going to check out the NutriBullet!

Be well

Bebe

Joann,

Funny you should mention your last response, "why can't one dr. do this all?" I was just talking with my sister earlier and asking the very same thing. This, I find, is one of the most frustrating issues. You tell your GP you have chest pain, they send you to a cardio. You tell them you have GI issues and they send you to a gastro. You tell them you have all these other symptoms and they suggest a psychologist aka padded cell . Maybe a padded cell is what I need!!

I am considering going to a dr. down here that is a homeopath as well as an MD (and of course she doesn't take insurance, but I've had many friends that have gone to her for other reasons with good results), but my hubs wants me to see a new EP (supposedly has experience with Dysautonomia) and get my heart checked out first before moving forward. Well see what happens...

Thanks again!! Be well