sisblostg

I went to the mayo in Scottsdale last year. I was surprised at how low the cost was compared to my local hospital which had done basically nothing for me. I went to see Dr Goodman, autonomic specialist (I liked him, nice guy, professional but not warm and fuzzy). I also had a cardiac consult and some cardiac testing (basically to clear me for starting my POTS recovery). I have 2 insurnaces, Medicare and a plan via my husbands work. They would not take my husbands insurance because it is a local HMO to my state. They were not sure what medicare would cover and told me up front that if any test was over $500 I would be told and offered payment options. I went through 5 days of tests and medicare covered 80% of all of them. I was lucky because Dr Goodman has rights in MN and the MN Mayo is an assigned medicare provider, Az is not so my bills were easier. My full week of tests cost $1855. Medicare covered about $1400. Even if medicare did not cover the $1855 I would have happily gone on a payment plan for the wonderful care and answers I got. If money is tight, and you need to stay overnight, use hotwire or priceline. Do not stay at the hotels in the parking lot. They are way overpriced and not too nice (IMO). I got a really nice golf condo off season for $30 a night a few blocks away and was super confortable, when the mayo hotel was over $200. I kind of doubt they will take out of state medicaid there. I think MN takes alot more plans and AZ and FL are more selective. When you call for an appointment they had the billing office that called me a few times before my appointment and went over the options. My 3 hour intial consulatation was $180, follow ups were $80. The intial cardiac consult was 1 hour (since it was not my primary issue) and was about $90. This to me was very reasonable since my local "I know knowing about POTS and could care less" dr charges $225 for 15 minutes. The autonomic screening was about $225, that included tilt table, qsart, and a few other "fun" tests. I know things like ECHO's and halter monitors were way cheaper and the results were very very quick. My entire 1.5 days of cardiac workup ran less then $500. After your intial consulatation the dr gives you a schedule. They try hard with out of state to work as fast as possible. Dr Goodman knew my insurnace and the one expensive test a series of MRI's he said was fine to have back in my home state since it would be covered at 100%. It was not a necessary test, just one to rule out an underlying issue. When I had the test done back in my state Dr. Goodman did a free phone consult about the results and what I should do. I say it is worth it to at least call and talk to the billing people. They were way nicer then alot of hospital billing people.

Make sure your dr fills out a full physcial and mental functionality report. It is an easy form to fill out. It the the most important part of the intial application. The person who reviews the intial application at SS is not a dr or even a nurse. It is a caseworker who may have never heard of POTS or Dysautoonmia so the funtionality report is easy to read. It basically asks on a scaled system (some forms have numbers so say never/always type answers) what you can do. If a caseworker sees that you can do very little to nothing in a clear form it is very helpful. Caseworkers are used to seeing the same conditions, RA, cancers, mental health issues. I got turned down the first time because they said due to my education level I should be able to find some type of work. Then when they reviewed again and saw by this simple number functionality form that I was not even able to shower by myself, or stand up for 10 minutes, or go anywhere alone etc I was approved.

The other issue I am having I did not mention is that I feel full very quickly, but I am still hungry. The Mayo did say they thought my stomach emptied very slow. I took the mag cirtrate first which did work a little(but since it turns everything to water it is hard to gauge how well). Then I did Miralx and it did nothing. I drink prune juice every other day in the am. I tried a stright stool softer, then dulcolax (first 1 pill and then 2), MoM, senacot, and an enema. I also tried caffinee, papya, pickle juice, tons of vitaim C, extra garlic, 2 types of that probotic yougurt, and some fish (forget which type my husband made it). I did not try any laxative with fiber. I do not think any other enemas are necessary since my lower colon is empty. It is my intestine moving slowly and once something gets to my lower colon it comes out fine. It is getting the stuff from intestines to get to my lower colon is the problem. I explained to the hospital since they think there must be some hidden obstruction that I know things are going through because of a pill I take and corn but it is taking from best guess about 6-7 days. I can't eat anything with high vitaim K because of my factor V. Im homozegous so unless I want to take 30mg of coumdian a day(that is the dose it took to get my INR to 2.0) I avoid certain vitams and foods and have stopped the coumdian. The dulcolax, and prune and pickle juice have worked the best. I only took dulcolax twice because I do not want to be dependant on pills. It is weird because if I take 3 days off of any specials foods or laxitives then I get the best results on the 3rd day. The days I try nothing I'm so bloated, hungry, and my stomach hurts but my pulse is the best and I can do so much more. I have been seeing and calling my dr but the ER scares me. I am landlocked but in a decent sized city and there is only one hospital for hours and it lacks specialists. I'm not big on a general surgeon doing the surgery a specialist should do. My ex being a dr I know too much and there is certain drs I do not trust(and for good reasons). My father, FIL and countless neighbors have died in this ER due to stupid mistakes. They misread both my CT scans , I had to sit down with the dr and explain it to him and then the same day my husband's aunt was in the ER because of a fall, they did a CT scan and told her she had stage 4 kidney cancer. The next day she found she was fine, it was misread. I hate being stuck in this city (if I were healthy I would love being here).

I do have a stethscope and a good one (I used to be married to a dr but that is a whole other story). My bowel sounds are loud after I drink prune, pickle or apple juice, loud like everyone can hear them. With my new diet which is high easy to digest protiens (fish, eggs) and lots of juiced fruits and some vegies I can hear bowel sounds at selected times of the day. Again liquids are very loud and pass through at a quick pace. The surgery I heard the ER discussing was a temp colostomy but they didn't get that it is not going to help my slow moving colon in the long run. I have been constipated all my life. My gyn dr was at the Er and he even said, when he did my last transvaginal ultrasound he could not believe how much stool he saw and I wasnt even feeling bloated or bad at the time. The only thing that works 100% of the time seems to be hormones. About 6 hours before my period starts my I always have a large movement. I can't take birth control pills or hormones (I have factor V). I had an ovary removed and I do not get regular cycles these days so I cant count on one every 28 days for some relief from the constipation.

I made it through the funeral. My GI symptoms and pain from traveling were what was bad not the POTS. The service was over 4 hours so I sat in the pew next to the wall and leaned back. Of course I got some eye rolls from the family because I was not in my assigned pew. I could not have sat straight up for 4 hours. I'm sad I could not get up and talk. I would have loved to. My husband does so much for me and it was hard for him to take time for himself. I had to force him to just leave me on the couch at the church and have him go talk to his family in the social hall. He was very torn between taking care of me and taking care of himself. Funny thing is all the family I was worried about didn't matter. The family I thought I would spend time with , ignored me, so I talked with people I did not think I would. I guess I am sinking into my roll of partciapant observor. I have to stay I wish I had prepared better for my GI/eating issues then POTS. Im still suffering over a month later because of the 5 days of travel and poor eating and sleeping.

I'm in the same position. I tiny piece of a filling came out a few weeks ago. I went to the dentist (a new one because my favorite one got called to Iraq). I have 1 cavity and this one that needs to be fixed. He said he would work with me and had 2 options for numbing he could try. After my appointment was lunch. He let me lie back in the chair for the same amount of time it would take to fix my teeth. Somehow it made me feel better to see how it would feel and what my pulse would be like in the chair for the amount of time it will take. I have to wait 3 weeks and Im nervous. It has been 8 years since I had a cavity or any dental work besides a check up. I guess I was lucky for years because I was born with only 1 adult molar so I had baby teeth molars. Since they do not have roots I would get them filled without novicane. Now that I am older I have needed pulp-ectomies and crowns on some of those and I have had fillings in my non baby teeth and had trouble with the noivcane. I ended up in the ER once years ago after getting multiple novicane shots(If I had known that I had POTS I would not have needed the ER, the dentist just got scared when my vitals went so crazy and I blacked out). Since then I take 1.5mg of klonopin .5 12 hours before .5 6 hours before and .5 45 minutes before my visit and it helps. I also a bad clencher/grinder. I have had little luck with traditional night guards. Have you seen or heard of NTI? It is a small but expensive nightguard. My new dentist sugessted it because I am really hurting my teeth/bone.

I think it was CMV. It could have been EBV, but I had tested positive for a new CMV infection and an active EBV infection. I also had a horrible strep infection at that time. I had been in a car accident and I told the dr that my neck hurt and he gave me a cervial collar and when I could not swallow a few days later the dr looked in my throat and there were so many spots. It was the worst strep infection I had as far as pain. I have had several strep infections that last 6+ weeks. My latest and worst POTS flare up started when I had a very stressful 6 weeks of barely any sleep (my child was in the hospital) and my CMV and EBV recativated. I think I worry more about CMV because the first infection I had got so bad it went to my eyes. I could have lost my sight. Every POTS flare up surrounds a stressful, lack of sleep time and the viruses being active now. One of my pet peeves if everytime the doctors see the CMV so bad and my immune system is weak they order an HIV test! I keep telling them it is not possible(I have no high risk activites, so unless the hospital gave it to me there is 0% chance) and they are all negative. I always wonder what the insurance thinks of me.

I glad to hear your news. Sorry you had to go all the way to a hearing stage. I went through a "mourning" tye process feeling so bad that I had to admit I was disable since I have a broken body and a mind that works(well most of the time!) and sad about my career dreams ending. Then I have seen how the extra money has helped my family and feel better.

I'm so sorry about what you are going through. I got disability, before my POTS dx but it took awhile. I was lucky because I started to work at 14 and went to grad school school and had a good job so I paid alot into SS so my money is decent. Since I get SSDI I get money for my kids and I use it to help make life easier for my husband and myself. The money has helped with cooking, cleaning, and activties for the kids. I used to be a careful coupon shopper. Now the extra money has helped because I buy food that is healthy but easier to prepare. I had both my kids take 4-H cooking classes (they can cook better then me now). My 8 year old even makes our breads. I also have given up the idea of my house looking perfect. I had my washer dryer moved right next to my bedroom. I dont like that vistors can see my laundry but I thought who really comes over? My kids love magic erasers, they are at the dollar store now. They will happily clean the house with a magic eraser. I drove for the first time a yesterday in over 18 months. I have a 8 and 13 year old(who has a disability which makes my 8 year old more capable of most tasks). During the school year I get up with them every morning, then I rest most of the day while they are gone. I do necessary chores in small bursts. I load half the dishwasher then rest and do the other half later. I will put the laundry in the washer and my kids take it out after school. I bought thier clothes so that they have outfits and they use the hangers with the clips and clip one outfit on each. Easy for them to put away, easy for them to get dressed. I consulted a PT and OT for a one time visit and got lots of helpful hints for how to conserve engery and run a household. I use similiar plan to what a pregnant women on bedrest would use. I have a great husband but no family support. I am an only child and I have ony 1 living cousin left. I only a handful of friends that still come by(and they don't understand). My husband does alot and I talked to my kids and told them the situation and they have taken it seriously. In fact biggest support in my kids and thier friends. I try and take a walk around our cu-de-sac at night. My goal is to walk to the school everyday like I use to (about 2 blocks away). The neighborhood kids beg to be the one to walk with me and I hear them cheering me on as I get closer to my goal of the school. I hope you can get disability. The extra money is so helpful. I can get kids to help me out with alot of chores for small amounts of money. It has also helped during the summer to pay for camps for my kids. If you need any advice on the disability PM me. I went to a year of law school before my POTS got bad. I'm not a lawyer but I have helped alot of people navagate the system(it is different in every state but I will try and help if you would like). It is one of the few things I can do that makes me feel useful.

Father's day was the last day I ate a full meal. I ate too much but I thought I would spend the next few days afterwords carefully eating and having some extra prune juice and trying to be active. My MIL died the next day and I spent 5 days traveling 1200 miles and my stomach just "stopped". I had the same "stop" issue a few months ago and took some mag citrate and a liqud diet for a few days and it got better. The dr said to try this again but it did not work. Then he said to try mirlax 4 times a day and after 6 days I it did nothing and I was very "jumpy", it made me feel overstimulated. In the last month I have tried every product and natural remedy I could think of and my stomach just is "stuck" or very very slow (not to get gross but I have not have a full bowel movement, just small ones or liguid, but with all the products I tried liguid is expected). I do not have an physcial obstruction and the dr will only send me to the ER and they say the want to operate but they will not give any solid reason. I am not fully obstructed, my colon/intenstine is not dying, and at first I lost 8 lbs (which was fine since I have a BMI of 25) but I have kept my weight steady. My labs are fine and I know I am getting enough nutrition even though it is stuff I hate to eat. The ER dr does not get dysautonomia at all and we have no GI drs locally. My stomach feels bad, it is bloated sometimes, sometimes pain around my belly button, my stomach seems to have an annoying pulsating, and I hate my limited diet. I want a steak so bad! BUT my POTS symptoms are better. From April 2010 to June 2011 my symptoms were constant. If I was lying down my pulse was 80, stood up jumped to 150+. I could not spend more then 10 minutes in a store or standing. Suddenly with my stomach being "stuck" my resting pulse is 60-65 and standing 90-100. I was able to go to the mall and school shop with my kid. I wear a pedometer sometimes just to gauge my activity level. Before my GI symptoms I would average about 2500 steps a day(which is considered sedentary). Last week I averaged 10,000 (which is consider active). I felt so normal yesterday. I drove my daughter to her friends house and stayed and talked to her friends mom for 3 hours and drove home. I have not done that in almost 2 years! Obviously I do not feel recovered, since I have pain from my hyperflexible joints when I am active, and the my stomach issues are not fun and limiting. I still doing my POTS treatment. I am drinking my 2.5 liters of fluid and have increased salt intake and taking klonopin as necessary for the adernaline issues. Is there a reason for the bad GI symptoms causing better POTS symptoms? blood pooling? How long can I let my GI symptoms be like this? is it dangerous(I know that there is "stuff" moving very slow sitting in my colon for a long time)? Since I have possible EDS (my dr is trying to get approval for me to be tested for EDS 4 because of family history) I am worried if my intestines are stretchy and I overdo the eating and do not go to the bathroom enough I could have my intenstine rupture?

My MIL passed yesterday and the stress and family fighting is already starting(2 religions, 2 burial plots, not good). I am trying to be supportive but I feel like I am being selfish asking for any special for myself. My husband is always so supportive of me and I feel bad I can't do the same for him right now. We had found an RV that I really liked but it is too far to drive and see right now(we had looked at too many that people lied about smoking in so we have wasted so many trips). Anyone live in Lake Havasu? That is where the RV is. I have my antigravity chair, ice packs, and extra klonopin. It is going to be a 4 day trip at at 90+ degree and a high elavation(we have to stop on the way at 10,000 feet and I always have trouble breathing that high) so Im pretty nervous. Trying to see something positive I did get an appointment in the city we are going to with one of my favorite specialists I haven't been able to see in over a year. Maybe something good will come of the trip.

I know for me my intial CMV infection(I got this in my 20s I guess most people are exposed to CMV and it is mild as a kid) which lingered for 9 months and was very serious was what preceeded my first year long POTS attack. I had POTS symptoms before that but they usually resolved much quicker. When I got my intial CMV infection the doctors could not believe how long it lasted. When it started to go to my eyes they freaked out, the doctors said the only cases of CMV this bad they had seen were people with AIDS(which I do not have and have been tested for multiple times because doctors always say I have a weak immune system) I was finally hospitalized. The CMV pain was very severe, every gland was so swollen and I was exhusted but unable to sleep because of the pain. I hate pain meds and the dr kind of tricked me. They said I had to break the cycle of pain and I nedded to sleep. I finally got better when I went in the hospital for a long nap. I remember them giving me a ton of fluids and then something that knocked me out. I sleept for 3 days and that was then turn around getting better from the CMV and my POTS. I know whenever my POTS has been bad I have tested positive for high levels of active CMV and EBV. I also know when I do not get enough sleep for a few days my glands pop out the EBV levels get high. I think it is all related in some sort of bad cycle, stress, no sleep, EBV/CMV, POTS, but which causes which? One out of town specialist brought up CFIDS but my local dr is old school about conditions like CF and CFIDS(which bothers me but I don;t have a big choice of dr's). Traci, when I did the, Standing and laying norepinephrine, epinephrine and dopamine and Angiotensin II test it is what showed I had Hyper-Pots. Basically when I was lying down my levels were normal and then after 10 minutes of standing up the levels (espcially noreinephrine) were sky high. It is a really simple test (not sure how costly) but if you think you might have hyper-pots I would get it done.

Thanks for your kind words Jan. Before my offical POTS dx I used to do exactly what you said, tell myself over and over again that I was going to be okay when I was out. I got out gradually like I am trying to do right now. I think the big turning point was seeing the numbers when I got formal dx. When I was at the mayo clinic they did a little reinactment of a trip to the store. They took my vitals before and then after. The afters numbers shocked me. The before were 120/70 HR 78 after numbers 50/30 HR 181. I felt like no wonder I felt so bad at the grocery store. The numbers on one hand justified I was really sick but on the other hand scared me because I felt I could no longer tell myself you are going to be okay, because 50/30 isn't okay! Right now when I go out I have my pulse oximeter on all the time. The numbers make me feel better and it kind of warns people I am sick. It also has helped at the checkout, most of the time I can skip ahead or they open a new line if my heart rate is high. 2 of my doctors told me to stop using the pulse oximeter, that it is a crutch to my recovery. I have cut back as much as I can but I still feel better especially when far from the car using it. I have also wondered is making your HR go up and down alot bad? One of my favorite things is yard/garage sales. I have a friend that will drive and Im a quick shopper, but is is bad to go from sitting in the car to up at a sale , 15-20 times in 2 hours, making your HR go from 75 to 150 and back to 75 20 times in such a short time bad? or is it just better to be getting out and might be helpful over time.

My last trip to the mayo clinic they repeated the standing/laying down norepinephrine test (I think that was the most important and useful piece of info for me). They also seemed to be very interested in sodium levels and vitiam D(I was really low on vitiam D). They also tested for Celiac, CMV and EBV (active levels). They also did tested for Pheochromocytoma, not sure if that was via blood or 24 hour urine because of my high norepherine levels. I also agree to try and find the underlying issue so if you have any guesses and your insurance will pay for the blood work I would get it done.

I am positive my heart is normal size. I had a cardiac catherization so the dr was inside and checked my heart and said it was the right size and no defects. I think excerise does help (helps me burn off extra adrenline). I think Dr Levine might exlcude people with EDS or joint issues or maybe h-pots?. I had my primary care dr ask for the protocol and he indicated I had suspect EDS and h-pots and he never heard back. The second doctor(he was the dr at the cardiac rehab) just put in POTS and talked about my excerise intolerance(this dr didnt understand h-POTS at all) and heard back saying they were backlogged and it might be a few weeks.

I try to eat high protien and sodium but because my digestion is slow I have to be careful with which protiens. I try and eat small amounts every few hours. I'll eat an egg with extra salt, a few pieces of cubed up ham(I buy a large ham on sale, cook it , cube it and freeze small packages), or cottage cheese. If you want to stick with lunchables you can make them yourself way cheaper. My son used to want them for lunch everyday. Pampered chef made a cutter that cut the cheese and deli meat in squares.

It is already 100 degrees where I live and I noticed last week my symptoms suddenly worsened doing the same actitives because of the heat. My house is the kid magnet house and at night around 9pm my front yard is full of kids. I usually enjoy the activity, and being able to be involved as much as possible (even if it means getting hit with a stray water balloon). Last week when it hit 100, and it is usually still near 100 a 9pm I was bending down to play skittle bingo and my body had enough. I have a cooling vest but I found I need more coverage. I bought big cold packs that can strap on in different sizes at the medical supply store. They are in an insulated pouch and stay cold for 4-6 hours. I look silly but I do my neck, ankles and wrists and it helps enough that I can stay outisde for a few hours and be somewhat active. I keep the packs on for about 30 minutes at a time, break for 30-45 minutes and then back on for 30 minutes. I'm usually pretty frugal but I spent 25 per ice pack and I own 5 and I have found them very helpful.

Wow Im impressed you went to disneyland. I have been many times but never with my kids. It is something I really want to do but I feel like I need to be able to conquer my small goals first like being ale to take my kids back to school shopping! I told myself if I cant go to disney in the next year, I have a few good friends in the disney area and I'll have my husband take the kids while I get babysat by my friends. Any tips on how you handled your day?

I bought mine on amazon for under $15. I have not had it help me with my HR. I did not like the way it felt. I also have had little luck with compression socks or full stockings. Along the same concept, I went to a friends wedding when I was less symptomatic. I had not seen these college friends in years so I wanted to look good. I bought everything that could suck me and firm me up. I bought, I'm not sure what it is called but it went on like a very tight strapless bathsuit and tightened in the back like a corset. I also wore some expensive pantyhose that were control top and thigh. I was able to make it through the wedding, reception and cruise, a 12 hour day. This was 20 months ago but it was the longest day I was able to stay out in a few years. I was also able to eat (how could I pass up jumbo shrimp and cheesecake) and felt okay. Of course I snagged the pantyhose that night and never bought another pair. I have found the stomach slimming garment to be just more comfortable to wear then the binder. Maybe it is just me but being one piece, almost like a second skin was and not feeling it when I sat down worked better for me. I wear it rarely though because I hate feeling hot(I guess I have to choose my battles between feeling hot and blood pooling) and I live in the middle of the desert so it is always hot. If I lived in a colder climate I think I would wear it more often.

I have been able to "recover" from 2 POTS episodes in the past but this current one has been the longest and most severe(complicated with my new flat feet and joint pain). Even though I still feel like I can do very little, I'm alot better then I was 1 year ago. 1 year ago I was happy to be able to shower and occansionally help with laundry/light cooking. Now because it is summer and the kids are home I'm forced to do more. I might be achy at the end of the day or occasional feel dizzy and have to lay down asap I know I should be able to do more outside of my "safe house" but I get nervous of the thought of actually trying to go out alone. My HR is still high when standing but I have gotten used to it and how to deal with it and the warning signs. So far I have tried the very gradual approach to getting back out but sometimes what I call secondary aniexty kicks in(or is it adrenline surges from h-pots?). For example. My child's school is 2 miles away. (I have never fainted from pots so I feel okay to drive short distances). I drive to the school with my husband in the car. My HR is 90-95. I tried to do this 2 times a week. My child had a half day and I had to go get them alone. I took the same 2 mile drive alone and my HR was 150 and I by the time I made it home(it didn't help that a fire truck went by and the sudden siren shocked me) I had an adreline surge and was all shaky. Another example is I can go to the grocery store for about 15 minutes with my husband and kids, if my HR is too high at checkout I go to the car. I tried going into the store myself for 10 minutes and by the time I was at the checkout I was shaking. I have tested myself at home. I have stood at my doorway talking to my neighbor for 30 minutes and I was okay(a little dizzy but I know I can do it). During the days I am up on my feet more then ever, making the kids snacks, filling water ballons, doing crafts and even shotting a few hoops. My mind knows that since I am at home if I feel dizzy or my HR is too fast I have a place to lay down right away. For some reason I think being H-pots makes it worse when I go out I get anxious because there is no place to sit down. If I can stand at home for 30 minutes I should be able to go to the store for 30 minutes. Just curious how people have gotten back into the real world again after being housebound? My doctors have offered my all sorts of meds. I perfer not to be on anything I have to take for a long period of time of wean off of. I have taken kolonpin on and off over the last 15 years. I take .5 a day and an extra .5 if I have a huge adernline issue. I took 1.5 mg in one day which is the most I have taken in 15 years because I had to go to a long event at school. It helped but I felt a little sedated which I didn't like. Severeal dr's have said to up 1.5mg klonopin a day while I'm getting the confidence to go out again. They say if I have taken it for 15 years and I havent needed a higher dosage till now I should be fine weaning back .5. One dr offered my Xanax which I do not like how it makes me feel(HR feels fast mind feels slow). I have been offered lexapro, cymbalta, effxor, and paxil. Since I have h-pots and all my dr's are very unfamiliar with pots or h-pots I scared of trying one of these since some are SSNI and some are SSRI's. I also watched a neighbor go through come off of cymblata when she lost her insurnace and it was horrible. My goal by september is to be able to drive to the school, drive to my dr's office and drive to the store for quick things like milk. I would like to take some burden off my husband who is running around like crazy all day. I have 10 weeks, should I try it medicated or unmedicated and which meds have helped others?

I have had a hard time finding a dr as well. The neuro that referred me to the Mayo refused to see me after my dx. It was the only neruo within 125 miles. No primary care dr would take me besides the public health department(the dr was super nice but didnt know anything about pots). I had to push for 4 months with my insurance to get a primary care dr. I actually see a pulmonologist. this dr knew more then the cardiologists in my area. There were lots of cardiologists in my area because of retirees but they focus on the same old issues. The pulmonologist used to work at a major research hospital on several teams with lots of rare conditions. He worked with alot of MSA so he understand OI but doesn't get the hyperandregic aspect(well I think he knows what it means but does not understand how disabling it is). I haven't found a primary care dr that is willing to treat everything in my area. Right now I use the pulmonogist for the OI and illiness like sinuses/colds and a psychartrist for the hyperandregic part. The closest psychartrist is 300 miles away so he only makes me come every 6-9 months. I also go to the mayo once a year. For my hyperflexible/EDS issues I see a podatrist and physcial therapist every few months. I wish I had better options but again no specialists. I used to live in new england and had so many choices. Now one HMO controls everything, so even second opinions are hard to get. I would move if I could for better medical choices (and a place where it is not over 100 everyday in the summer), but my kids are doing great in school, DH has a flexible job so he can help me and we have decent insurance so moving is not a good option. Your dr is correct there is no money or not good money in treating us. My father and ex were both dr's so I know way too much behind the scences drama. If you think about it we go to the dr and spend more then the average time and pay a co-pay. There are very few extras or tests invovled after the dx. It is mostly check ups and sick visits which the profit is low on. Most of the dr's where I lived luckily are salaried but the ones that are not get about $65 from my co-pay and insurance, since it is a contracted rate. I usually spend at least 20 minutes sometimes 30 with the dr. The dr always is careful to spend extra time check drug interactions and possible reactions. After rent, staff, malprcatice taxes etc $130 an hour isn't that much, maybe the dr nets $45-50 for that hour. One of my friends who is a family practice dr just had to cut out OB and pedatrtrics because she was losing money due to high malprcatice in those areas and low reimbursement. She said the nurse practioner makes more money then her and she regrets the extra schooling and stress of becoming a dr.

We are looking into buying a used RV right now. I would have already had one but DH's job took back the company truck so we had to buy a truck for him and used our RV money. I am a very careful saver/spender these days. Renting an Rv on short notice could be good or bad where we live. I live right in the middle of the national parks so the summer is full of tourists renting Rv's. The winter you can get them really cheap or in the summer they are looking for people that will drop off in another city. My daughter wants to go to NY and I looked into renting but the deposit was $1k and $250 a day plus extra miles(and high gas prices!) so we looked into buying because alot of seniors in our area are retirees that buy them, use them little and then when they pass away or go to assisted living the prices are can be very reasonable. In fact the one I was going to buy before DH needed a work truck would have been cheaper to buy then renting 2 times and it was only 8 year old and low miles.

Sorry DH stands for Darling Husband(the only other board I post on is a gymboree board and it is the term to use)or if you don't like your husband I think the D can mean something else! DD is for daughter and DS is for son. We would be getting a hotel. It would be about 40 miles from the funeral and 25 miles from the family gathering. Most if the area is rural and I prefer to stay in a hotel that at least has a kitchen type area and extra space for the kids (like the Hyatt summerfield or residence inn types). There are only 2 hotels near the service and they are both 1 star rural truck stop type places, and they do not have non-smoking sections and are rather loud so it is not a good option. That is one reason why if I got sick at the funeral DH just can't leave and bring me back quickly. the funeral's usually last about 3 hours. The other issue I did not mention, so many issues, is that the funeral is at a high elavation, I believe 6000+ feet and I am used to 1000 feet. My oxygen drops to below 90 at 8000+ feet and at 6000+ it is usually 91-92ish. The only other reason to go to the service is my kids will need me. I think DH will break down, I also think Dh will have to give a talk at the funeral. He hates public speaking and I usually asks me (I love public speaking) to do it for him. If I were healthier I would love to have given a talk. My kids will have many questions and I think he will have a tough time answering them. My daughter went with DH alone to see MIL last week and came back with 100's of questions, from medical issues to why certain girls were wearing naughty clothes so young. The graveside service is close to where we live, about 40 minutes, I could go to without a problem if it were not for the traveling the day before. I thought about just going to the graveside service because it would be so much easy for me, but I feel like I am letting DH down. He does everything right now without complaining and this is the only thing he needs me for. I realize if I do not go the younger ones will say horrible things about me, they do not understand my illness. The older ones for the most part do understand as best they can and will not pass judgement. Dh keeps telling me either way I shouldn't worry if the younger ones say things, because we will probably not see them again. My MIL was the only one that encouraged the family to get together as a whole. We usually just see the oldest for birthdays and holidays and I think 30-35 cousins and 10 aunts and uncles is enough for my kids (I grew up an only child so the whole big family thing is overwhelming in general).

I'm not sure of the effects on slow release meds but this is how I have changed my habits. I have pretty bad conspitaion with my slow digestion, so every other morning I have my prune juice. I never know how well it will work so I do not take my meds till after the prune juice has worked. If I feel my stomach is very full, like at family dinners on sunday I delay taking certain meds, like klonopin with a long half life. I have always wonder the medical answer to this question. I used to take procardia xl and sometimes I would see 3-4 of the procardia in one stool (sorry to be gross) but the dr. didn't seem to be too worried when I brought it up.

Unless it is winter. I would drive from Denver to Scottsdale. I drove from Utah to Scottsdale, it was about 8 hours and I'm glad I did. It was more coming back that was the issue. I was happy that I got so many tests done so fast at the Mayo but it was so exhustaing, usually 6 tests a day starting at 6am! I have never had to be in a wheelchair before but towards the end of my time at the Mayo I had to be in a wheel chair full time. I was glad coming home I was driving so I could stop and eat what I wanted and take my time. I have flown alot and always felt pretty bad during and afterwords. i could not imagine flying after going through those tests. As for travel tips. Before I knew I had pots and I had to travel alot(I thought I just was a nervous flyer) I would pick a flight that was less full so I could have three seats to lay down. I would practice being on the plane the week before. I would have my blanket and laptop and play the same game lying down every night. I would wear the most comfy clothes I had and had some sort of hoodie or cardigan if I felt cold. I would eat the same snacks I packed during my practice times. I have had a big debate small vs big planes. When I thought I was a nervous flyer I always thought big planes are better because they are safer and have more open seats. Bigger planes are more often nonstop. I prefer only one take off and landing. However my last two flights I did better on the smaller planes but it is always hard for me to seperate the psychological aspect since both smaller flight were the last leg taking me home wher I could finally rest!