friday7

That's sounds really great. I would love to find something like that. I guess I just gotta keep looking. I do take care of animals once a week at Petco. The cats there are not sold from the store but they are a volunteer group that Petco lets use their cages. That's not to hard because it's only cleaning out a few cat boxes. Maybe they have something like that near you. I actually wish I could do that more often but they have enough people to take care of it.Plus I'd really like something to get me around people more. That would be great. I've only come across clerical kinds of jobs..Well those are the ones I can do..There are places I might like to volunteer but it involves too much. I'm not a real social butterfly either.which is a shame because they have a lot of opportunities for people like that. Like mentoring a kid, or a companion needed for seniors. AS I mentioned I was looking at this site- http://www.volunteernewjersey.org/vnj/ They have a lot of opportunities there..I found some I would have like to try but I can't drive that far. If you are in Jersey, I found a lot under museums- http://volunteer.truist.com/volunteernewjersey/volunteer/search-2.aspx?keyword=museum&__form_op__=Go! I was hoping to find a small art school or organization near me that might need help but nothing so far. There is a place that's about 40 minutes from me but that's kind of hard since most days I can't drive and my Mom would have to bring me back and forth. I know what you mean though it would just be nice to be in a place where creativity was taking place. Well I'm gonna keep looking because it does have a lot of volunteer jobs listed and I haven't gotten through them all.

Thanks so much!! I couldn't get the link http://wwingw.americanwheelchairs.com/specusedpermob.html It kept saying the domain was wrong? But I did see the rest.. This is so great. If I could get one it might really help me be able to get out and volunteer. The one at this page: http://www.amazon.com/Reclining-Wheelchair-Backrest-16-19/dp/B000LX1J2O/ref=sr_1_7?ie=UTF8&s=hpc&qid=1283196760&sr=1-7 says "Economically converts any wheelchair to a recliner." Is that saying you can attach it to a wheelchair that doesn't already have a reclining back? It really doesn't explain it further,so I don't know if I'm misunderstanding this. I can't afford to get the chair myself, and I don't have very good insurance. I have Medicaid. But they were good at getting me the other wheelchair and that was probably more than five years back. So even though I still have that one they might be wiling to get me this since my needs have changed. Especially since the prices of the ones you showed me aren't too bad. If not I can try that site you sent.It'd make me feel much safer to be able to recline if I needed to..not having to wait for someone else to allow me to lie down. You've given me renewed hope, that it can be possible for me to be out in the world again. Thanks so much for your help!

Yeah that's it. It is hard finding the right volunteer job. There are a lot that they want you to go to training for a such.But I think if I look into the NJ volunteer site I might be able to find something, even if it's just doing some filing. I don't really want to be filing but I think if it were in a place that was active and had nice people around, it would be okay because I would like the social interaction. I would really love to find something artistic to volunteer at, but I haven't really seen anything around here that's artistic. Oh and sorry about the misunderstanding but the part about the list of demands was intended to be a joke. I would only say that here. I would never say that to someone that I was applying for a volunteer job with. But when you write on the internet you can't use your tone of voice or facial expressions to convey that you are just playing around. Thanks for the support.

A never heard of a reclining wheelchair. I do have the type that the legs stay up. I dont' really use it much now. I got it when I first was diagnosed. Back then I needed to have my feet elevated just to go out, so I was able to get the kind of wheelchair that has legs that prop up. It does help a bit because if I were to sit at a desk or something it would at least keep my legs up and reduce symptoms. But when you say reclining, do you mean that the back would recline as well? That would be great because then all I would need is enough room to put my chair back. I wouldn't have to worry if they had a place to lie down because I would have it with me. The idea of bringing a mat is a good idea too. I don't even mind laying on the floor when I get the need, but I think that bothers people. They feel funny letting you lay on the floor or something. Or maybe it sounds like an odd request.I think if I had a mat it might make them see it as a medical need. Sounds weird but I think somehow if you have things like a cane or wheelchair I think people respect that you have an issue. So maybe even something as little as a note from a doctor and a mat might make them realize this is a condition that is real. Thank you for your help.

Thank you. You words help a lot.That part about staying strong and realizing that the person that I'm talking to has their own baggage is very helpful. And visualizing ahead of time seems like a good idea.I tend to take things personal because I'm am so over sensitive . Thanks again. I am going to print this out so I can reread it when I want.

HI.I've been feeling for a while that I would like to get a volunteer job, but I am afraid because I have such unpredictable symptoms and people have a hard time understanding that. I have never had a time where it was dangerous for my health to be working/volunteering.So it's not like should feel responsible for putting my health in jeopardy. But I do have limitations. For instance.Well here's my list of demands.LOL I need to be able to come and go.I can't have a day where it is absolutely necessary for me to be there. I have to be able to work for short periods of time and have breaks when I need them. I have to have a place to lie down if I need to. This is the one that I worry about.But really it's not that much of an inconvenience.For instance once when I was in a partial hospital program, there were couches in one area, and in between groups I would recline for ten minutes.It got me through the day,and didn't hurt anyone else. After lunch I was able to lay down in an empty room, on the floor but I didn't mind..It also got me through the day. The thing is. I had a couple of experiences with people not understanding this and making me feel like there is not place in the world for me unless I was completely well. It sounds like a distorted thought to me, but yet after the experiences I've had I kind of believe it. One time I was attending that same partial hospital program just a a different year. I got sick, felt faint and wanted to lie on the couch. They refused and said it wasn't possible because there were people that were depressed and that they would then want to lie down on the couches if they saw me doing it. It didn't matter that I was sick, all that mattered were the rules. I understand the rules but if someone is sick you need to bend the rules. But no. So, I had to sit in a chair, and wait for my Mom to come pick me up. So while sat there in stead of lying I get worse and worse..By the time my Mom came she had to take me out in a wheelchair. I spends the next few days feeling horribly sick. This could have all been avoided by letting me lay down on the couch. It made me feel horrible. Not physically but emotionally. Here was a place I was supposed to be getting cared for in and they were ignoring my needs.The only one that really helped me was another patient. She stayed with me and got me water. The staff just let me sit there. It was a horrible experience, because it felt as if they were saying we don't care. When I brought this up to my therapist there. She kept explaining why they did what they did and didn't take my said at all. I never felt safe there again. I guess that experience has never left me. But a few years later I was really depressed again. I needed help and tried to apply at the partial hospital again. Due to the fact that I couldn't even travel long enough to get to the one I went to before.I applied at the same hospital only a different branch, near me. The person on the phone was explaining how they couldn't accept me because I couldn't come all five days. I explained to her that I had attended before and that they let me come for three days. But then she told me they couldn't help me and I should go somewhere else. I explained that there was no where else for me to go. She kept telling me how it wouldn't work and was developing a tone. I told was trying to tell her how they allowed me to come to the other branch of the same hospital for five days and then cut it down to three after a week..but she didn't want to hear it, and was becoming even more abrupt. So I got upset at her..I didn't yell or call her names, I just kept asking her where I was supposed to go and trying to get her to understand that I needed help..and she hung up the phone!Now keep in mind this is a place that deals with people on the verge of suicide! I mean, could you imagine?! I couldn't believe it. So, I did something I would not normally do, I called her supervisor and told her what happened. She was very good. She apologized. And offered to let me come and basically did what the first girl should have done. Only problem was after that, I again never really felt safe there.I mean that's all you really want when your out there.Just the knowledge that if you feel sick someone will be compassionate and understanding. Also because of my nervousness about not feeling cared for, I kept thinking 'what if I get sick, they wont' understand, They will throw me out', and stuff like that. Anyway, the anxiety produced more POTS symptoms of course and I wasn't able to attend. The thing is If I had felt welcomed right from the beginning this probably wouldn't have happened. I still have these experiences in the back of my mind and I feel that no one wants me because I'm not normal. If I was normal I wouldn't have needed these people in the first place. I don't feel that anyone would understand. And all I'm asking for for really is understanding.I'm not asking for them to build a ramp for me or add parking spaces.Nothing major that comes out of there pockets. Just a place to recline if I feel the need to. I'm just so afraid to look for something because if someone says no, I feel that will add to the rejection from the world I already feel. I know there are kind and understanding people out there, but I have trouble believing that. AND i'm afraid of running into careless lunatics like that last woman while I'm trying to find help. I have thought about going to a Disabled person's program and asking for help. I have been to a support group run by them once, and they were very nice. I thought maybe they could represent me and explain to someone my conditions. I see they get people jobs that have certain conditions that the employer is willing to accommodate for, so I figure maybe they could do the same for me with a volunteer situation. But again I am afraid..I am afraid if they say no I will feel that rejection from the world. I know I have a disability but because I am not mentally impaired I fear that I will not be treated with the same rights. It's kind of like, because I look and seem normal I feel afraid that they wont' see me as disabled and feel that I should be able to do these things on my own. And I'm not doing so well on my own. It would really help to have someone behind me.Sort of an advocate. I did call this place and leave a message, but they haven't called me back as of yet..And I guess I'm afraid if they do call..What do I say? How do I ask for help? How do I know what I'm untitled to as far as their help? And most important, how do I not get crushed if I wind up talking to someone that's not very helpful or concerned about me or worst, another idiot like the last time I tried to get help. Well, I'd appreciate any advice. If anyone has been in a similar situation..or has gotten help on the job. Or if anyone's ever felt shunned form the world of "the Normals", I"d appreciate your advice. Susan

OMG that is the worst thing about some doctors. Their Egos. They think if a patient is telling them something that somehow that has something to do with them. They can't think that sometimes we actually have valuable information to share..They can't think that we are intelligent people who have had an illness that there is not much help for so we are trying to help ourselves by educating ourselves. The best experience I've had is where I found some info on the web and the doctor actually listened, discussed it with me and then we actually wound up treating me based on the information I brought to him..Wow..If only all doctors would be that willing to work with their patients. Unfortunately this doctor was a Gyno, so he coulnd't help me with other things. I wish he was a GP. I recently had an experience with a doctor like yours.Probably even worse..the Ego on this guy was unbelievable. He'd cut me off in mid sentence and tell me he didn't need that information. It actually to the point where I told him to let me finish my sentences. Then when he finally let me finish one , he told me "now that's the kind of thing I want to hear"...Duh..Then listen! LOL Obviously a control freak..So, I won't be seeing him again. I wish I could buy some thick skin on the web somewhere.LOL I can't help being affected by doctors like this. Sometimes they make me so insecure I start doubt things that I know are right.

I used to take Xanax when I was younger and I decided I was going to stop..And you guessed it major withdrawal symptoms..thought I was going crazy. Never stop taking meds cold turkey..Or even try messing around with your dose by yourself.I even had trouble one time because i split a pill in half..I didn't know it was time release..So, when I split it in half I actually increased it's dosage..Made me so sick...What a horrible night. So I learned as you did the hard way. It's best to discuss what you want to do with the doc fist..You're body is screwed up right now so it might want a higher dose but that doesn't mean it's best. You already went through the worst part. It Usually doesn't last too long. If you feel too sick though get to the doc. Or an ER if you feel that bad. You said you want a moderate daytime dosage. So can you talk to your doc about that? If I'm hearing right he/she had you on a higher dose and you thought that was too much? Do you feel that he/she will not want you on a lower dose? Cause you really should be able to decided how much of this kind of med is right for you. It's not like thyroid meds or something,where you need a certain amount. So, you doctor should understand if you want to decrease the dose. I hope you feel better.

Yeah it hasn't helped with the ear problems..if anything it's worse cause now I've got this crushing headache. So there's no reason to continue. The GI 's office already knows I want to get in right away..the best they can do is call me if someone cancels. I've been eating just soup the past few days which has helped a little..I don't know why but whenever I get GI symptoms it helps to eat soup.

Thanks..Well my stomach is sensitive to begin with, and I don't really know if I ate something when I took the pills. I still couldn't get in touch with the doc that prescribed them.Well I'll make sure to take them with food until I get a hold of this guy and tell him I want to go off. thanks.

Sorry forgot to mention the reason I was taking them in the first place was due to inner ear problems. I"ve been having trouble with my ringing in the ear, feeling of fullness in the ear, some hearing loss, the usual symptoms I get when i get an ear infection or fluid in my ear. The ENT didn't think I had an infection but said to try to methlypred for two weeks and see if it helped. I'm on 4mg for ten days. So, I think it's a pretty low dose, but I would definitely not stop any drug suddenly..I did that once when I was a teen and experienced terrible withdrawal symptoms. I just wonder if it can have anything to do with what I've been feeling lately cause it started around the same time I started the meds..could be a coincidence..I'm just looking for a reason for this sudden onset of GI symptoms after having such a long break from them..I was doing fine for a few years with only minor symptoms..And then all of a sudden about two weeks ago, I start getting really bad GI symptoms.. So far the only thing that's different is the pills..Well I'm calling the doc and telling him I want to stop the Mehtylpred just in case it could have something to do with it.

Interesting. I'm not seeing any swelling, but I feel really bloated. I have used charcoal in the past for GI symptoms. I was thinking about that also..I hate that I can't see the GI doc for two weeks. I've been trying to reach the doc that prescribed the methylprednesone but so far no luck.

I was reading this page today http://en.wikipedia.org/wiki/Dysautonomia and this line struck me and I thought of you. " In some cases, a procedure called "cardiac ablation" can be performed to stop the heart symptoms completely. It is not recommended in POTS patients, and can in fact worsen tachycardia." Is this what happened to you? Do you feel it is worsened after the operation? This is really the problem. I have gone to docs that had never heard of POTS. Then I'd explain it to them and they'd think it was just that I had trouble fainting if i got up to fast. I think a lot of doctors really don't really know a lot about POTS unfortunately. They call it rare..I dont' think it's that rare either. If doctors never heard of POTs or know little about it, how are they going to diagnose it? I'd definitely try that list of doctors someone posted here..Unfortunately I'm not in your state but there might be someone on that list you can see in your area.

I"ve been feeling sick for a few weeks..well extra sick;) and I've been going through my head trying to figure out if anything has changed lately to cause this and the only thing I can think of is I've been taking Methylpred for a few weeks. I'm not sure if this problems started before or after taking the drug..But anyway, I've been having GI symptoms. I feel really bloated and have lots of pressure in my arms and legs and chest. It sometimes gets worse after I eat. I"ve had GI problems in the past. I even had an ulcer and have been on Prilosec for a few years. But I was almost to the point where I felt like that was in the past. And now it' s back and it feels like all of a sudden. A few weeks ago I was okay and now I can't get to sleep because it' s so bad. I"m hoping it's not another ulcer..But at the same time I wonder whether the Methylpred could aggravate an existing ulcer? Nothing else has changed..I'm taking the same meds, eating the same things, taking my fiber pills etc. The only thing different is the Methylpred. I've also been feeling lots of pressure in my head. And some loss of balance/dizziness. Again I've had this problem in the past but not like this and again this came on rather suddenly and more severe than I've ever had it. It's feels as if someone is squeezing my head. Also I am hypothyroid. I read that for some reason you should talk to your doctor about talking Methylpred with Thyroid problems but it doesn't say why. In another site it said something about not absorbing the meds correctly..So I don't know if it's just that the thryoid meds won't be absorbed correctly or if it can cause side effects..It doesn' t really go into detail. I have an appointment to see the GI doctor but not for two weeks. And I'm not sure if i should stop the Methylpred, cause i'm not sure if it could be causing any of this..I'm afraid if it is causing it I could be in a lot worse shape in two weeks. I was just wondering if anyone else has been on the Med and what experiences you've had.

AS everyone else said. The neti pot..I use a squirt bottle version which basically does the same thing. My doc also told me to put a few drops of oregano oil in with the salt solution. It's supposed to have antibacterial and anti-fungal properties. But you have to take it slow with the dose because it is strong! First I put one drop than when I got used to it I put two. I have also have frequent ear infections and therefore am looking for alternatives to antibiotics. Last time had a cold I took one clove of fresh garlic, chopped up with a glass of tomato juice each day. Usually it takes months of getting better and worse before I finally feel well. Probably due to it getting into my ears and causing an infection. But this time I didn't get an ear infection. And I felt better within two weeks. So I'm really hoping that the garlic was the reason. Also cutting out dairy has helped me.

oh wow , well that makes things even harder. Even if you got up the dough to see a doctor , they'd probably want to do some tests and that would run into big money. I don't know much about getting care without insurance but maybe this might help: http://findahealthcenter.hrsa.gov/ You might be able to get someplace to work with you..For instance I've saw this CFS specialist and they didn't take Medicaid. I had to pay up out of pocket, but they were very good about understanding me not having the money. If I went in for a visit they would take two checks totaling the whole fee. Then they would cash one , the month of my appointment, and then they would cash the second check the next month. The also gave me a reduced fee. The weather can really makes things worse though. I get sick from the heat and I've been hoping for rain to cool things off. Then the rain came and I got bad sinus headaches that made me sick. I wish there was some special insulation you could put in your home to keep the weather from affecting you. I would recommend writing things down daily. For instance you said if you go outside and come back inside it triggers it. Stuff like that. Like what the weather is like, how you feel. How you feel after doing an activity, or eating different foods..Maybe then when you can get to a doctor you can have some info that might help them figure out what's wrong. Or you might just start to understand it yourself.

Well everyone does experience these problems as you can see. Make an appointment with the doc to talk about it , and then try your best not to think about it until then .I know easier said then done. But every time you find yourself worrying about it remind yourself it is not going to help you in any way to get anxious, It just always makes things worse. Try not to go to the bad or incurable place. It doesn' t have to be bad or incurable. As you can see lots of people with POTS have memory problems. Some have it worse then others. Sometimes my problems scare me and I'll think i"m getting worse and worry about it, but then I stop thinking about it and it it'll go back to normal. So, I try not to go to a dark place about it cause that makes it worse. There are exercises people do to help memory. Here's a site I found that has mental exercises http://www.lumosity.com/ I usually play video games on Shockwave. It keeps my mind working. They always say the best way to keep your mind healthy is to use it. So, I play strategy games and puzzle games. Things that give my mind a workout but aren't too stressful. plus they're fun . I feel it helps me keep my mind active.

I'm not sure exactly what is going on , but I know the burning feeling from within.. My dad had Neuropathy with his diabetes. And I've had it in small doses..Since POTS has neurological symptoms it makes sense. Everything you've described does sound neurological. I'm not doctor though. But also I know the heat has been affecting me terribly this year. Have you been out in the sun a lot? I also felt that burning thing in my face after spending the day or rather night in the heat watching an outdoor play. I was so sick and my face burnt as if it were sunburned..but it wasn't. It was also really dry. So I figured I was probably a little dehydrated. I've felt little zips and zaps at different times , especially when my POTS was real bad and mostly while standing for too long in one place. But not as extreme as you are talking about, and not usually while laying. How are your electrolyte levels? Have you been to the doc?

Wow sounds like you've gone through a lot , especially for someone so young. First off I'd see another doctor. If it were me I would want some other opinions as he doesn't seem to be helping you , or hearing you. Is your current doc the one that did the Heart ablation? They don't seem to be sure if it's a heart problem or not..Cause POTS isn't really a heart condition, but these guys are doing surgery on your heart! He told you he think you have POTS..but What does he intend to do about that? Do you have any blood pressure issues? Or low salt levels? Exactly what tests have they done? What state are you in? maybe someone here has a doctor they trust that you can see. I am in NJ and could point you to the doctor who diagnosed me if you're here. He's a CFS specialist but he also knows a lot about POTS. Susan

Well, I've never had this particular issue ..maybe someone else here has. But I know that heat does exacerbate POTS symptoms so I guess it's quite possible. How about where you're getting the IV's what do they think?

Wow that's a really difficult issue. It must be hard not having anyone around that understands too. Have you told anyone you work with your have POTS and that the heat makes it worse? is there anyplace there that you can work that might makes things easier..say if you work in the greenhouse with the plants, could you maybe work at a register or some other place in the building? just throwing ideas out here. I was just looking into getting help from a place nearby me that helps people with a disabilities. It surprised me what they could do to help. You might want to look into one of these kinds of programs to help you keep your job. I'm not sure what's out there in your area. You'd have to look that up. But here's a site that is kind of what i'm talking about: http://www.direct.gov.uk/en/DisabledPeople...mmes/DG_4000347 I figure before you go and quit your job there might be some organizations that can help to make things easier for you one the job.

Thanks It's good to know I'm not the only one who feels this way. Yeah I'm kind of afraid of things that colon cleanses as well. Not that I don't think they can help but I've had problems with things like that in the past. I find it helpful to know that you and your friend experience headaches because of this. I keep thinking they are separate issues because that's what a doctor told me once. MY intuition tells me this is not true. Well I should say my body tells me. Cause every time I have this feeling it is also accompanied my lightheadedness and headaches or pressure in my head. I really haven't had this problem for a long time. I used to have it all of the time. I went to doctors for help. I even had trouble breathing. They would say it's anxiety. I"d say I wasn't anxious until I felt I couldn't breathe right. But so I noticed more and more that whenever I felt this way as soon as I would get rid of the gas I'd feel better, and breathe fine. Anyway, I think I have let things go in the past year. Once I get rid of a symptoms I tend to get lazy about keeping up what helps keep it away. It's like I feel I'm normal and forget I have to do the things I need to, to keep it that way. I was taking bran every morning, and four fiber pills . And also the Prilosec. After I got regular I was feeling pretty good for the past year. But lately since I was feeling good, and I'd skip taking a pill here and there. or I'd forgot to take them for a day or two. And I've stopped taking the bran. It didn't really effect me , and then I stopped the Prilosec. I ran out and hadn't had them for a week. Now I'm feeling all gassed up again. It kind of figures. But , first I got all panicky,wondering why I was feeling this way, until I sat and really thought about it. I realize it makes sense that I'd feel this way since I wasn't taking care of myself. So I keep telling myself that I've got to get back on my routine and get regular and that should help . In the meantime It's just good to know I'm not alone. thanks;) Susan

I know that POTS can cause GI symptoms but I 'm curious to what kinds of symptoms people have. I often have a squeezing sensation in my arms and legs. A pressure. But when I look up these symptoms it always mentions pressure in the chest not arms of legs. ALso when these symptoms are bad, it seems that walking actually makes it worse. It's like it makes the gas build up more. This does'nt make sense to me because I've always heard that movement or walking will help break up the gas. But I've had this happen to me so often now. I'll be feeling lightheaded and all while walking and then I'll start to feel pressure in my limbs and also chest. If i keep walking it continues to build up and then I feel like I'm going to pass out. The symptoms sound like POTS symptoms, but, this is different thanwhat I normally experience when I get POTS symptoms from waking. Usually when I get POTS symptoms, faintness, etc. while walking I'll sit down and rest. Then i 'll continue on. And since I started taking salt tablets and got my pressure up, I usually don't feel faint from walking as long as I sit enough in between.. I found that if I walk then sit then walk then sit , and I don't overdo it. I'm usually fine. But this is different. I'll be walking and I'll start to feel weak and my legs will start to feel pressure in them. If keep walking it just builds and builds. and then goes into my arms. I then find myself spending the whole night up in bed throwing up water and trying to burp . Then if I can go to the bathroom I feel some relief..Also I'll feel relief if I burp enough. I find that this happens more if I don't keep regular. Which I haven't been lately..And I was off off my Prilosec for two weeks so I'm back to being gassy again. (I started taking them again, but only for two days now) It happened today a little. I have had gas the past week, and today I was just sitting at my computer for a while I got up to go into the other room and as soon as i started moving I felt like i was going to pass out. I quickly laid on the bed, and then I felt the pressure in my arms. I took some seltzer , and started burping, then went to the bathroom and within a little while I felt better. I was able to walk around. It was definitely the gas that bothered me..It just doesn' t make sense . I can't find anything about gas making you feel faint or lightheaded. I don't know I guess i'm just wondering g if anyone else has anything similar. I told my doctor and he was like 'walking doesn't build up gas'. But I swear in this case it does. I wonder if having POTS makes my problem different than the normal person with gas.

Really? I got them for about ten bucks+ shipping on Amazon..Dont' remember the brand name though. I think it' s 'evercoo'l? I found the best way to work with them is to have several and cool them in a bowl of water with ice for about a half an hour-or more if you can spare it. Then I put one on and when I feel it's losing it's cool;) I trade it for a fresh one and put the warmer one back in the cold water. It's not as good as a cooling vest i'm sure, but at least it helps. I didn't take them with me last time I went to watch a play in the park and I got sick. So I got this flexible plastic cooler, you know like you keep lunch in and I'm going to keep a couple of them in there with ice packs around them when I go out from now on. It's good that it's a small lunch pack kind of thing cause that way I can just bring it in the stores with me so the ice packs won't melt . I could shove my wallet in my pocket., and It'll just look like a weird purse.LOL ..I think it's a good plan..I'll see how it works.

I tried Provigil a few years back. I didn't' notice any difference on it..But then I don't have the best of luck with meds.