tinkerbella

I was given a script for a WALKER and WHEELCHAIR and told you can't get both at the same time and mentioned this and couldn't find the post so I'm just going to make it brief. I had to pay upfront 189.00 for a fancy smacy walker purliebule with a basket and brakes. I felt like it was my first bike. I thought the woman said I would be reinbursed in full by medicare/medicaid. Brain fog, I was having a major life decision going on picking out my new set of wheels and had been standing too long. The check came from medicare today 106. 18. I called the store she gets annoyed with me and tells me we told you that. I had told them that Walgreens had them on sale for 99.00 that week when I was at the store and they told me well they take care of all the paper work, so I went along with them. I can't do math, never could and ask her so will I get more back from medicaid? She is annoyed again and gets off the phone and comes back and say maybe if they want to pay another 26.73. I tell her they are sussose to pay what medicare doesn't pay. That's not what I was told and I had people with me. Now I have to get a WHEELCHAIR and want one live someone here has purple, that don't have that so they want to find out who you are. Earth Mother was it you? I need to know is it a light weight, legs move up and down, are you exercise intolerant? Do you get tachy pushing yourself? then she tells me I should get a PT EVAL BEFORE GETTING EQUIPTMENT TO BE SURE IT'S RIGHT FOR YOU, as usually with medicare they will only give you the standard and it's rented for a year and then you graduate to the light weight. Ok next, I hate to admit the next, I'm falling in love (not) down so making it to the bathroom really hit me hard when I landed in the sink when I passed out here last night. I need a COMMODE, yes by my bed. I will have a nice write up on match.com, now wont I. Maybe I can make a nice cover out of sheets I love to decorate whith sheets. Guess what , they are covered as long as they are by your bed. Remmember that now. Next item SHOWER CHAIR,, none of those items are covered at all. $49.94 for a SHOWER STOOL. I'll continue to sit on the floor of the shower. COMPRESSION HOSE, now was it green who said they were covered by medicaid? Well, it all depends on the day you are there and who you are talking to as all my other items may be covered by Soft ortho provider that takes your state insurance. cHECK YOUR STATE GUIDELINES FOR THESE MA HAS THEM: If you have medicaid and disabled you can also get rides to you doctors with a PT1 form most don't know how to fill them out. You doc must apply and then you have to be approved. I have learned how to do all of this. The doctor is suppose to fill the whole thing out, but they don't know how. We need to be advocates for ourselves and others who are unable. It is like a script only to get you to the services you need. Have your provider go online to your state website. If they do this online it takes them 30 mins to process. By paperwork 48 hours, I have had to teach all my Pots docs how to do this on paper, next will be online as once you are enrolled everything is easy after that. Also many state insurances will reininburse you for you travel expensives, look into that. Many people don't know that, as they would rather pay you than hire a cab company. I hope this was helpful to those who have medicare primary and medicaid secondary. It really sinks after working your whole life to be left with this insurance, but it's better than nothing. FOR THE PART D DRUG PART, I'm so glad I got AARP, BEING DISABLE MAKES YOU ELEGIBLE, YOU DON'T HAVE TO BE A SENIOR! you get to be in any plan that fits your drug needs. I chose the premium plan and pay for it It has been worth every penny. I think next year I'll bump it up the the next level so all vitamins are covered. I hope you know if you are declared disabled by the state you are able to change your part D drug plan monthly if you wanted. I have already hit ) co payments so I'm not swithing a thing and they have covered everything. I''VE HAD TO LEARN THE HARD WAY, SO I THOUGHT I WOULD SHARE ALL OF THIS. Blessings and Love to all~ BellaMia~

Thanks Stace, I didn't see salt as a componant in concerta, I'll investage that I take 54 in the am and wanted more as my bP won't stay up postural. I have some pretty funny stories how about how I taught and for so long and how I managed as it was in a pool high powered, deep water, H2o areobics. I could never count my heartbeat and would have to get out of the pool and hold onto the rail for dear life and try to catch my breath and drink. I would pretend I was going to teach them from the deck as I rested low to the ground. or sat. I had a bad back and I used that as an excuse. I always wondered why I'm I was out of the pool, but I was teaching several classes a day along with teaching and directing children's programs. I tell a lot in my about me page. They always knew something was wrong with me. Boy, do I miss the interaction of people! I'm so happy I have this forum and all of you have been a blessing to allow me the freedom to say whatever I need to at anytime. Thank you everyone for your ongoing support and information. Blessing to all today~ bellaMia~

Stace, I find this very intersting and I hope one day we get to chat.... Today I've very confused, called the doctor after another passout last night said you should have called 911. Ok I live alone and I tried to explaine how dumb I am after. Plus I don't do er's. It will scare my dog to death I'm always ok afterwards, just banged up and maybe messy from what spilled on me. anyway, I know you all know what I'm talking about. My PC is moving today but the med/sec has pots also so I have a saftey net. I also bleeding vaginally and had a little bout with cancer last year. so my lows are getting lower and the migrains are back. I posted somewhere that caffine had been my drug of choice for years mostly pepsi or coke diet soda by the gallons. I had been self medicating my self along with the sodium in the drinks. then I was on ritalin large doses you addhd, didn't know it was brain fog. As I've had this Potsy thing forever, just gotten worse as I've aged and added medications to peserve the organs. I stopped the ritalin years ago when there was the big hype it could hurt one's heart and I was actually having the feeling like i was having anxiety attacks. Once dx'ed I was put on so many different meds for allergies, Pots, to try to sleep, gastro, let's just say when they give you a form to fill to fill out for meds an allergeries they weren't thinking of me, that's for sure. So, I asked for ritalin back again and the doc suggested concerta er just to help with the brain fog and keep me awake. Now I need to see my cardio again thursday and will be interedted in telling him about the atterall. my perscribing doc is away and would like his imput for dosing. as I need help so I won't crash in the night and would like to maybe have a little jolt of energy as the dose of concerta is worn off. How much adderall do you take at 1 pm if you don;t mind telling me? When I taught high powered areobics I took it as late as 6pm. but most say do not take after noontime, or you won't sleep. These days sleep is fragmented for me. Hope all is well everyone. As we walk on a fine line trying to balance our lives and not fall. ~We are going to know a new freedom and a new happiness one day~ from the promises in a time for joy BellaMia~

i had the rast test and and barely nothing showed, i did start itching like crazy and was bright red. They had never seen anything like me and hours later had no voice. It was new year's eve and I ended up in er for eppie pen treatments. my doc was so scared he was from a different hospital, but met me there. He had no idea why. I celebrated the new year with friends waiting to be discharged to their house as they wanted me watched for the night. i was allergic to many things, no one could explain my IgE was off the wall this was back 15 years ago. when i called back they said that is for people who have lots of allergies. I'm on Allerga 24/7. Is mcad something new? I've itched for years slowly been in the hospital for what they thought was asthma/allergic reactions and was told now I never had asthma. So it had to be allergies making me wheeze. So what is mcad? or what is the best link to go to? thanks. Blessings Bella~

thanks, i don't think they will ever take off their rose colored glasses with glitter on them. lol! but i still love them!

could i borrow some, i look like a pin cushion. my hands are all pin pricks and the use the baby butterflies to draw with.

Yeah, I laughed also. I'll be laying down thinking I'm going to get up and paint this whole house. Have a yard sale, simplify give the dog a haircut, make scapbooks on all the kids artwork and catch up on the books I'm writing. All in one day. LOL! I'm lucky if I empty the sink on a good day. My daughter told me, " mom there is no need for this after I cleaned this mess out for you." "I'll never do it again." I wanted to dig a big whole in the back yard and bury all my dishes like some rich actress did. But, the last thing I dug up was a plant and I was grounded for 15 mins. I just laugh a lot and pretend I'm in a movie, gets me through the day. Ha ha ha ha.

I guess we all have to find what is best for us. I like the walker as my dog is a bit afraid of it and walks slower with me. He was giving me tendonitis. Plus I use a crutch most of the time in the house or inbetween going places and with the walker. I (go back to my days teaching personal trainer/ exercise) hold on and do a pelvic tilt and get my body in proper body alignment. I pretend there's a string attached to my head, like a puppet and someone pulls me up straight. I pull in the abs and I feel so much better. I haven't made any adjustments to my walker but, I believe the sales person said that it could be adjusted. Yeah it can I'm looking at it now and it can. So you walker people straighten up and walk and rest. Also rememer, if you are going to get things through your insurance it has to be in steps, walker, then wheelchair. You have to show a need for the items. I still need to know who it is that has the nice purple wheel chair and who makes it? I have to get to the store very soon. I see that I only got 100 dollars back in reinbursment for the walker and I paid 189. Darn, I ment to call the store today, but had a million other doctor calls to straighten out. Plus we're having a heat wave here on top of being dizzy and I just missed the ice cream truck go by. Seems to me I wanted to tell someone else something but I forgot! Brain Fog! BellaMia~

It's nice that you really care about your sister. I have concerns about many members of my own family. My doc said leave them alone, they will in their own time have to make their own decisions about what to do. I hope as a parent, and sister that I'm role modeling the best I'm able as many are displaying symptoms and brush them off as nothing. they are in denial and in our family the heart enlarges, they all knnow and they are only fooling themselves. All we can do is pray for them. Sadly, I know 2 of my sisters would rather drop dead one day than live the life I live. Another brother has so many of my symptoms, it's like talking to a stone wall. So it's my kids and grand babies I worry the most about as my doc told me to tell them to tell their doctors. None have been told. It's hard when your the grandmother, grandson was born with brachycardia and has been speech delayed. He just started talking but it fragmented speech. I kept saying did you tell the doctor about me or early intervention that his grandmother has a neuro problem as that would have got him in the door. Denial is really difficult. I agree you can't say anything as the sister, as I mom I've always had a open line of communication till the dx. She has promised me she will go to the doctor asher heart is beating way too fast and she will tell the doctor about the kids at my granddaughter's August check. I must be patient and wait and trust that she will folow through. My son once said to me, "Mom they are not your babies." If you send a letter to the doctor and she finds out, she will never speck to you again!" It's hard to let go when you love people and you see they woun't tell. I feel your delemma, I feel your pain. No one wants anyone to be sick ever. My youngest child has an illness that can be passed on to his grandchildren and for that reason alone he won't have children. My heart hangs heavy for him and for me. It did the day he was dx'ed and two years later he was struck again with another disease. At times life does not seem fair! I admire his decision, but wish it was one he never, ever had to make. I wish you and yours the best~ I pray for miracles for my son~ Hugs and love, bellamia~

I used to feel great or so I thought drinking soda with caffine all day long working in and out of a pool with young children for most of my life and then teach water areobics, swimming to all ages, but heart jumping out of my throat and ready to faint. Caffine was my drug of choice, and my car wheels turned in at every Duncan Donuts we hit along the way to work and back home for coffe also. I was active constally, ( falling ) but was always working in activities that allowed me collapse to the ground and believed me I needed to. I got addicted to double choc. donuts with colored sprinkles too. I was also the director of most of what I did. I was in control of when I could just take off and sit, cool off keep drinking to keep myself perky, and happy, happy, happy! Then, I would go home and collapse till the alarm went off and I never knew how I got up and dragged three kids out of bed and dragged them back to work with me. I would lay there forever kind of like I do now, only now I know my BP is so low. I'm sure it was back then. Most of my jobs were camps, children's programs, swimming, so they could come along with me till they got older. Now, never a day without symptoms. Sometimes I think all the meds makes things worse. My primary care told me since she dxed me she hates telling anyone they have POTs. But, I try to make the most of it, and trust that this is a bigger plan that I have no control over right now. Look for the joy in every day and blessings along the way. May we all find relief and be symptom free one day! Love to all~ BellaMia~

Can anyone tell me if they have had this happen to them on Midodrine? I was on it a small dose early evening and at bedtime. The Dr. told me I was the one 1% that have to take it laying down ad the instructions say never lay down. I was laying down even at the first dose. When I went back 2 weeks later I had no idea what the year was and was sure my blood pressure machine was broken and displaying the wrong year when I went to download the info onto my computer. I saw another Dr who saw I was so confused and made me tell the cardio. I was SCARED, really scared and thought would I ever get my brain back. Well, according to my family I did and professionals agreed. I still play the ongoing game of charades, but I disclose right upfront with people and I laugh about it. Now I know I need it and I see my cardio weekly now and we have to make a plan. Nighttiime has become dangerous for me. Anyone else have to take this at night and had the feeling of losing their memory. I started florinef this morning again , we'll see what happen with this. Also got thigh high compression hose and love them. "Safer than asprin" that's when I say, "you take it then we'll talk doctor." Blessings and love to all~ Bellamia~

I eat and bloat and hurt so bad. The bloating is getting so bad. I've got to get my back brace and see if that helps. Getting places is difficult when you depend on others and I don't want to make a day at the medical store a memory for my kids. I have a lot to pick up. They'll probaably be picking up me. LOL! I will do this gracefully. Thanks for the tips and kindness. Blessings and Love to all~ bellamia~

ajw4055, What a good memory you have as it started when my iron dropped to 4. they keep checking everything and unless recent antibiotics are interfering with blood work like I keep telling them. I'm fine, although they don't know why I have the belly pain all the time and have just developed a habit of not wanting to eat much. I will crave these things in the night. They say I'm having waking dreams and eating and passing out. or near passing out. The other night I came to with oatmeal all over me in a chair. Oh what a mess! Today we start more meds for the low bp. We'll start with the am first at least at night I'm most passing out in bed or chairs. Think I'll cook a bunch of chicken today and start eating right. Doc said I'm addicted to carbs and sugar and to eat lots of chicken and protein. Thanks for you kindness and concern. Blessings and love to all, Bellamia~

good evening: this is my safe place to tell it all, I don't have life threatening doctors, they are straight up as we have run out of options. It is here where I come for support and have tried my best to give support back to everyone when i'm able. Sorry if I scared anyone, all our cases are different. Also, as i stated else where that my kids don't need to need to know all the details yet. they are just taking baby steps right now in the process of choinic illiness of their mother. like dominoes all set up in a line we are all effected and knocked down. Some fall sooner and are able to accept, others put on blinders as it's easier right now, and some get angry and pull away or lash out at me saying angry things to try to make me fight harder or just because they don't want mom sick. i'm dancing as fast as i can. i have a sign on my wall as you enter my back door, it says, "please be nice or go away." I'm tired of being there for the rest of the world, tomorrow that sign is moving to my door. I don't think anyone has been able to see it. I want the same love my dog gived me, UNCONDITIONAL! I'd also like the same support here and the FREEDOM to speak the truth. I pray tonight that all of us affected by dysautonomia that we could all be magically cured. Magical thinking worked when I worked wirh little children, as it bought me time. Time to come up with a real plan, but this is reality. POTS IS REAL! Prayer For All of us struggling with dysautonomia~ I pray for more time, as it takes us much, much longer to get things done. I pray for all of us to have understanding Doctors, Family, and friends who can give us unconditional support amd most of all love. I pray for my hogher power to, "fake it till I make it," attitude to rise above when I'm at my breaking point. I pray for paitence for myself and for others when I can't find my words or remember if I took my meds 3 mins ago. I pray for new friendships here to enrich my life by an email, phone call, or video chat. I pray that there is a reason why we are all gathered here together, grasping for answers. I pray we are able to make Pots be found eariler, that one day all PC docs will screen anxiety and depressed patients for postral pressures along with thyroid screening. MY CARDIO has told me many pots patients have been sent for shock treatment when it was pots along. I pray we here can make a difference to be blessed that each and every one of us get the right health care we deserve. I pray that others start taking what we have seriously. Dysautonomia isolates us, er's and hospitalist don't know how to treat us, should our doc not be on call it can be a nightmare. I pray we all have an educated family member incase we're unable to speak. I pray one day mine will be ready to listen and learn. I pray for everyone here when I read your posts. Sometimes I tell you in my post. but please feel free to ask me for any prayer requests. I feel if we let go of stressors somewhere here, we feel a bit better. I pray that to my higher power and thank him tonight as he has brought a new member in my email today that is not far away. I hope I can be a comfort to this new menber and feel blessed tonight. I give thanks to the lord for all this site has brought me. And l look forward ro continued Love and Support. May we just remember, we are all different, unique and have hearts that beat to the beat of a different drummer. We all just want to get well, be loved, and have support. Please watch over all of us Dear Lord or whom ever you believe in. Amen~ blessings and love to everyone, bellamia~

a medical supply store. i found my insurance wouldn't pay for one , but would a nice walker with a seat. one that looks really cool!

i'm getting so i don't want to eat any more, when i eat it hurts my belly, i also never know if it will pass right through me. i was told to eat lots of fiber and little meals throughout the day. i would rather drink, and i drink salt water, gatorade, gingerale, plain water, milk. occasional, i crave meat, cereal and ice cream.

my neuro said that med compression kneen high are the easiest to get used to to start. forgot to add this. time to let the dog out. bellamia~

medicare would be saving money to prevent further dammage. I've worked a full life now disabled legally 8 years. after 2 years they put you on medicare primary and sadly i'm so poor i get secondary medicaid (supplemental) medicaid will only pay a certain percent if the item is covered by medicare. when i was in the supply store last a man was getting compression hose and his the dr didn't write how many. the woman askd how many would you like? they decided 3 pairs and she could write it in. I said is that for compression hose? she told me yes. then I said and I can't get one pair but uou can write in 3 for him. That's not fair, do I have to go home and and wound myself for a pair? She only laughed She was making money for her store. I also had to pay upfront for my walker and have to go back to order the wheelchair as you have to get these things in stages with insurance. walker first, then rent a wheel chair. keep this in mind if your disabled and on medicare. blessings bellamia~

i'm disabled after working most of my life and now on medicare, who won't pay for compression hose unless you have a wound. they are 70 dollars a pair for knee high at the med. supply store. my walker i had to pay up front for and wait to be paid back. when i get the wheelchair it's rented to me for a year then it's mine. i hope i get to pick a purple one to feel youthful. . i have a list of med supplies i need now, from back braces, carple tunnel braces, to shower stools. i keep telling myself, This is only a movie." helps me laugh and make it through each day. Blessings and Love, Bellamia~

waterbaby, send you hugs and prayers that magically it will dissapear. strangely my last one did or the second hospital didn't see it. i've had several taken out. i've been very sick and in the hospital last weekend for 4 days due to lower left guadrant pain. my good old irritable bowel flared my my pots really bad. when i try to do anything like a normal person i flare again. last night after a day at the zoo with family, i was a wreck. after eating out my meal went right through me as soon as i walked in the house. at the hospital i asked if it could be my ovary again they said, "no." i felt pregnant and looked it and only have one workng overy due to an ectopic preg. earlier in life. after, my body broke down last night i started vaiginally bleeding again. this was an, "oh crap moment," for me as my gyn oncologist said, if i started bleeded again the not only could the cyst be back , but the uterine cancer. I was given till lat fall not to bleed to be cancer free. monday i must call my pc and start another investigation. i'm just feeling so tired right now of everything. mine are complicated, i have to have an arterial line put in because my blood pressures are so unstable. they always do the quickest procedure possible at the top hospital in boston. be well. blessings and love to all~ bellamia~

i keep mine right by my bed and as soon as i open my eyes after 2 am. then i take them and fall back to sleep. when i do wake i can't stand up for the longest time. so i now keep my meds near me all sorted out in a pill box with a drink. i still lay there till i can safely stand. bellamia~

Darcy~ once a week, i fake it till i make it! i'm paying the price right now and will be lucky if i don't end back in the hospital. precious planet time is what we have, some more than others. bless you with your little one, and remember i'm a challenging case as my doc tells me. most of his patients can tolerate bb and other meds. i have a team that manage me, i've been like this my whole life, only never knew till not that long ago what it was as i was mis dx. may you be surrounded be people who understand and support your condition always. blessings and love~ bellamia~

my doctor told me this week we have run out of options with me. He really is leaving an ablation and pacing as a very last resort, but feels like that really never fixes the problem with POTS. I'm allergic to BB, can only take a sliver of clonidine, mestinon i do take but have severe side effects. I been on other meds midorine, even at bed time and florinef. I really dislike them, they play havoc on my memory and quality of life. All this salt is making me sicker also. It's come to this now, take the meds or your heart is going to enlarge. There is no more time to play games. My weekly infusions have gone to 2. I can't even eat food anymore, I just cant keep fluids in me. My grandmother died at 54 of and enlarged heart. My doctor and I can only assume that she may have had similar issues. when your heart overworks this is what happens. i hope i made it clear as i'm not well, had nice day with family at zoo. did too much, drank gatorade all day, ate on way home came home and got real sick. solid food goes right through me. bellamia~

thanks future hope. today i escape to the world of family and go to the zoo in the rain. thnks for letting me get it all out here, so i can fake it till i make it with my family. blessings and love, bellamia~