friday7

Have you ever had your B12 levels and a urinary MMA (Methylmalonic acid) checked? It could be a b12 deficiency. I have to take daily subcutaneous injections of B12 (2500mcg) or the numbness and tingling will return within a week or 2. What you described is exactly what I get too. It's almost like a sunburn, tingling and stabbing feeling on the skin. My left leg starts to go numb and falls asleep very easily too. The B12 injections take all of that away though so I've stayed on them regardless of what my serum levels look like. If you already supplement with B12, then you have to get your urine methylmalonic acid levels checked as serum levels will be falsely elevated and look normal. B12 serum levels under 400 is too low.

I don't think I ever had my B12 levels checked. And I know I never had Urinary MMA checked.

I also get a feeling like bugs crawling on the skin. But I think that's restless leg syndrome. I usually get that when I'm trying to sleep and it helps to take Magnesium. But this other pain and numbness doesn't respond to taking the Mag, so I figure it's something else.I'll see about getting my B12 levels and Urinary MMA checked . Thanks:)

I did more research on this topic and on Mayo's sight it states that 90% of pots patients recover. On Vanderbuilt's sight it also suggests that most pots patients also recover. While reading these two sights they stated that they estimate there are 500,000 cases of some type of dysautonomia. I think the count of users on this site is around 14,000 total. Are most of us on this site the 10% that don't recover? Just some thoughts I would ad to this forum.

Maggie

90 percent..Wouldn't that be lovely? I have improved since my diagnosis. But I think there's an important factor in getting better. And that is getting the right help. I feel I could be much better if if only I could find a doctor to treat me. Even though I have a diagnosis, I can not find a doctor who will treat me specifically for POTS. In fact that fight me when I try to get help. They dont' believe what I have to say or information I bring in. I bring in printed info from this site, that I know is never read.

I think the 90 percent improvement rate depends upon, first getting a doctor to diagnose you, and then getting a doctor to treat you. Most of the doctors I've seen never even heard of POTS. It's been impossible for me to find a doctor who will treat me for POTS with the insurance I have. Not really fair when you consider if I had diabetes or another disease I'd have no trouble being treated for that disease. The only reason I was able to get diagnosed was because at that time I was able to put out a few hundred dollars to see a specialist. I can no longer afford to do this. So I can no longer get treated specifically for POTS. And of course that's gong to affect how well I do at getting better.

HI. I have had different kinds of nerve pain in the past few years. I'm trying to better understand exactly what kind of illness POTS is . I mean I know about Dysautonomia and that has to do with the autonomic nervous system. But I"m not sure really what it means. If I have POTS do I then have Dysautonomia?

I went to a Neurologist before I was diagnosed with POTS. And he took some basic tests and then said I was cleared as far as Neurology . In other words there was nothing wrong with me that had to do with Neurology. I mentioned POTS but he never heard of it. He then sent me to a Cardiologist because of the Taccycardia..He didn't help either. I finally went to a CFS specialist who Diagnosed me with POTS but I can't really see him because he doesn't accept my insurance, and I can not afford his fees. I saw him the first year I was daignosed and we tried several meds, but my it was hard to pay the fee. Now my father has passed and my Mom and I are just trying to pay the rent and eat. We have no money for this doctor anymore.

So, I just see a regular GP.

Now I know there are certain disorders that are neurological. Like MS, Parkinson's,Epilepsy, and I know there are certain conditions like diabetes that have Neurological symptoms, such as Neuropathy. I'm trying to figure out how POTS fits in here. Is it a neurological disorder, or is it like diabetes , where it has symptoms that are neurological?

The thing Is I have had nerve pain and numbness for a few years now and I have never gotten any help with them because as far as the doctor's I've seen are concerned I don't have anything that qualifies me to see a neurologist. And the Neurologists I've seen don't recognize POTS as causing these symptoms.

Like I have some burning pain occasionally. It feels exactly how my father, who was diabetic, described Neuropathy. (I've been checked for diabetes and I'm hypoglycemic but not diabetic)

I dont' get this pain often, Thank goodness, but it happens. Sometimes it feels like a burning hot needle just stabbed me in the foot and then it goes numb. Luckily it doesn't happen often but I do get numb toes off and on. And sometimes my legs get numb. And it is largely ignored by my doctors. As far as I've read about POTS, it is not uncommon to get neurological, nerve pain or numbness. Is this correct?

Another and more troublesome nerve pain I have trouble with is vaginal and clitoral pain and numbness. This is very upsetting because I've been to the Gyno and as we've looked for Endometriosis. Didn't have it. I had a polyp, that was suspected and causing this pain but I had it removed and I still have the pain.

I had my ovaries removed but that was three years ago. The only thing he can't come up with is that I"m still getting used to being in Menopause. I understand that since my Menopause was caused surgically, that it would be sudden and might be severe. But it has been over three years and I feel my body I already went through that . I went through being on HRT and then not needing it anymore because all of the hot flashes mood swings etc were gone about a year ago.

I also dont feel like that's the cause of the pain because I started having the numbness a few years prior to the operation. It's just gotten worse over the years and now it also includes pain.

It just seems from what I read like it's nerve pain. And since I have POTS this seems to make sense. But I dont' know how to get help with this.

The doctors I see will say yes, I understand you have this thing called POTS but since I'm only going to treat what I know, I'm not going to recognize you have anything wrong neurologically.

So I don't know where to turn.

I guess I would like to know if others have experienced nerve pain. Especially, vaginal or clitoral,...but any nerve pain, and how have you been treated for this and by whom (what kind of doctor)?

Also I am trying to understand, Dysautonomia, what is it exactly? If we have POTS does that make us have Dysautonomia and is it that normally treated by Neurologist?

Sorry if this sounds dumb but I have vague ideas about this and I'm just trying to just more clear on it.

I'm so glad to hear this news. Especially for someone so young. You are right we do need to hear about the success stories. It gives me Hope and encouragement. Thanks for sharing.

My son's POTS specialist is a neurologist. He was the first one to be able to help my son. The doctor who originally diagnosed my son was a cardiologist, but was not helpful at all. All of the autonomic testing was done by this neurologist, so I have found him to be the most helpful.

Can I ask what kind of tests they did on him?

When I went they did the basic tests. But I know he could have done more. He just wasn't interested and passed me on to the cardiologist.

I was later diagnosed by a CFS specialist in my area. the problem is I can't see him now because he doesn't take me insurance. So right now I'm only going to my GP. She's nice, but not much help for POTS.

I went to a neurologist when I first read about POTS. He was no help. I had to tell him what POTS was, and then he thought it was just Orthostatic Intolerance. When he heard the Taccycardia part he sent me to a Cardiologist. Who in turn said I should see a Neurologist.. I also had to tell him what POTS was.

I guess the thing is it depends on how much they know about POTS. Since this doctor I saw knew nothing of it and wasn't interested in learning something new, he was no help. If you found a doctor that was familiar with POTS I would think it could be helpful.

I know the feeling of being afraid to do something because I'm afraid of what might happen. And sometimes I wonder if I could be doing more, and I'm holding myself back. But at the same time sometimes when I'm feeling good I"ll overdo it, and make myself sick.

It's hard to know. I think I had such a long period of time where I couldn't do a thing, that now I feel a little better but I'm used to thinking , I can't do that. Then I started to think. What if I can and thinking I can't is holding me back.

The thing is most of the time it has to do with driving with me. I feel I can't go to the store, not because I can't walk around but I'm not sure how I'll be when I drive. Sometimes I feel good , but then I worry, what if I go someplace, walk around and then feel sick and can't get home.

I'm thinking , maybe I'll start going out every day , just a little, somewhere where there's no traffic. Like drive down the street to the Krauser's. That way if I feel sick I can always pull over. It's not like I'm miles away from home. And that way I can get used to going on on my own again.

I think that's the hard thing, you have to start with small steps and not overdo it. When I feel good I want to drive to the shore (which is about an hour away) and I really have to hold myself back from doing things like that. And encourage myself to take small trips more often instead. It's hard though. I guess you have to find a happy medium, and be patient.

Finally saw Dr. Yan Go at UCLA. She was a wealth of information.

She asked me to get a BP monitor so I could do my BP in the AM laying down, then stand up and take my BP again. She wants me to track BP over two weeks to see if there's any drops or weirdness going on. She felt this is more accurate than a tilt table test.

This morning I took my BP. When I got up, I was really dizzy. My BP shot up but the pulse was exactly the same as laying down. Is this normal? Should it have gone up as well?

AS far as I know everyone has differing experiences. In my case my BP doesn't usually change a lot until I have been on my feet for a while. And my heart rate usually shoots up immediately upon standing. But that's just me. I know some people just have a high heart rate and normal or high BP so I imagine it could go the other way as well. I'm just guessing here though. I can only speak of my experience.

I am having an awful time being patient with doctors who say that it doesn't matter if you are hyperadrenergic, or that it's just part of POTS, etc. I have been told all along that it didn't matter, but I pushed for the tests anyway, and found out I was in the 10% of POTS patients with very high norepinephrine levels. Well, being a nurse, I didn't let it go at that. I asked for a 24-hour urine test to check for metanephrines, which is diagnostic for an adrenal tumor called a pheochromocytoma, which is a "rare" tumor that secretes large amounts of norepinephrine. They didn't want to do the test, but I said, Hey, I have to live with POTS for the rest of my life, and if there is even a small chance I have a pheo that could be causing this, and that can be taken out and I would be fine, I want to rule it out!!!!!!!!!!!! So they did it. Guess what? My normetanephrine level came back 3 times the high normal! My doc didn't know what to do with this info, so I got on the web and found the USC website which knew a lot about adrenal tumors, so I faxed them all my lab results, and within an hour I got a call from them saying, "You need an MRI!" So I got my doc to order an abdominal and pelvic MRI, with contrast. GUESS WHAT?? I have a left adrenal tumor! My doc said, enough of this, I'm sending you to an oncologist! I'm having a MIBG scan in 2 weeks, which should be diagnostic for a pheochromocytoma!

They say there are only 500-1,100 cases diagnosed in the U.S. every year, it's that rare. Well, my theory is that many people with hyperadrenergic POTS have pheos and don't know it, because no one will run the tests! I think that in years to come, when it's too late for us, they will make this link. Do you realize that most pheos are diagnosed on AUTOPSY??!! What does that tell you?

My oncologist said he could not believe that no one had worked me up for a pheo before this, as all the symptoms pointed to one... he said they should be ruling out pheos before they just say you have hyperadrenergic POTS and leave it like that... because PHEOS ARE FATAL!!!!!!!!!!!

The docs tell us that POTS isn't dangerous, just annoying... but hyperadrenergic POTS is something else... it is the high norepi levels that cause death early by causing malignant hypertension, and damage to the heart!

I've been diagnosed with POTS for a year now, and it's only because I've researched and asked for things that anything has been done to help me. And I now have a pheochromocytoma, which they say are so rare, they didn't even want to check me for one!

Please, all you hyperadrenergic POTS patients out there... this is serious. You need to ask for the tests, and don't take no for an answer!!!!!!!!

Thanks for listening, I finally found someone to help me... and you need to too!

Stacy

Wow that is something. Good thing you pushed for the answers.

I don't know much about hyperadrenergic POTS and norepinephrine levels. I'm wondering what tests do you need to find out about hyperadrenergic P.O.T.S.?

I know also that they sometimes ignore slightly high or low levels for certain reasons.

I still always get a copy of my tests and check out the results of my tests just to make sure. If I'm unsure I'll got to the doc and ask for an explanation,until I'm satisfied.

If I'm not satisfied I'll research it more and see the doctor with my concerns..For instance, the GP I had before I was diagnosed said my BP was fine between 100/60 and 90/60. I was feeling dizzy and weak, but it was fine to them cause it was low. I then got a sodium level that was sightly low. That was fine too to them. But this bothered me because I had the symptoms of low BP. Then I looked up low BP and CFS ( which I was told I had) and found this site. I started testing my own BP Lying sitting and standing, and found out how my BP would fluctuate and get lower. Then it made sence . It must have been dropping while I was walking. I actually found myself having to sit down on the floor in the middle of Walmart one day, to keep from passing out, thinking this is not right.

Anyway, the thing is most times it' s not a big thing if they say it's not a big thing. But sometimes it could be something that needs further investigating. I'm glad I investigated mine because it got me to this website,I found a doctor and got a diagnosis.

I saw a blurb on CNN this morning about doing your own medical research- something MANY of us have been forced to do. Rather than admonishing the patient for "cyberchondrism", the correspondent, Elizabeth Cohen, was focused on teaching is HOW to do it better. For instance, she recommended bypassing Google and going directly to the original study via Pub Med or other search engines. Once you find an article that appears to relate to your condition, she had hints on how to read & understand all of the daunting medical terms. Then, this is big, she recommended E-mailing the original doctors who published the study. (She shows how to get their E-Mail addresses.) Apparently many patients get a reply Then, she instructs us to take that correspondence, along with the research, to our local doctors. She even had tips on HOW to present it to our local doc. Good Stuff!!!

There is a whole show focused on this tonight called The Empowered Patient on CNN @ 7PM EST. Apparently, she's also written a book by the same name.

Because we have rare diseases, we often have to do our own research- finally help on how to do it better

Wow that is so great. I have to watch this. It's nice to see something on TV about using the internet to research your illness. Sounds like it could be very helpful.

Not sure about the pamphlet. My favorite GP response after he figured out I had more than a HA was "I'll be back in a minute, I'm going to have to GOOGLE that one! Love the honesty!! Good luck with your new GP. Hope they can help!!

Brye

LOL Well at least he Googled it. That's good. Some of them just go, oh okay, then continue to ignore the fact that you have it.

There are some brochures on DINET that you can print and use. You can find a link to them on the right hand side of the main DINET page, about halfway down. I'll also include some links here in this reply to make it quick for you.

Here is the brochure that you can print yourself: Dysautonomia Brochure

There is also a brochure that DINET will mail directly to your doctor: Brochure for Doctors.

I believe DYNA also has brochures somewhere on their website (www.dynakids.org) that they send out to those who request them.

When I go to a new doctor, not knowing if they have heard about dysautonomia or not, I usually bring an article or two about POTS or dysautonomia that have been written by Dr. Grubb or other dysautonomia specialists. Here are two by Dr. Grubb. Some of the articles I have used in the past are no longer online, at least not at the old web links I have. I need to do some google searching for my articles again sometime. But for now, here are a couple that you might find helpful:

Postural Tachycardia Syndrome

The Postural Tachycardia Syndrome: A concise Guide to Diagnosis and Management

It can also be helpful to bring your old medical records.

I hope that your appointment goes well and that the new doctor will be knowledgeable, smart, and willing to learn more about dysautonomia.

Rachel

thanks this is really helpful!!

Love the cat- very cool. Reminds me of the short films you sometimes see before a feature film at the movies. You know, they pass out Oscars for that category too....I'm just saying.

Love your drawings, especially the portraits. Elvis & Johnny Depp almost look like photographs.

You're very talented! Thanks for sharing.

Aw, thanks.

Susan -

That was very amusing - thanks for sharing! Bruno is one unflappable dude.

love cats -

noreen

Thanks. I love cats too. I think I was a cat in another life.

I had an appointment with an endocrinologist who is somewhat knowledgeable on POTS (and my case). To my surprise, this doctor prescribed effexor, an SNRI (antidepressant) that works on both serotonin and norepinephrine receptors. He claimed that thbis drug might help me with POTS symptoms and flushing, of all things (there are documented cases of it helping 'hot flushes', and the doctor said he had even prescribed it for idiopathic flushing and it had helped patients in the past).

The thing is, my serotonin and norepinephrine levels (blood/serum) are already elevated! It seems counter-intuitive for me to use this medication, if it is going to make these levels 'worse'. I discussed this with the doctor and he said he was prescribing it more for its ability to 're-regulate' the autonomic nervous system. Any thoughts? I should mention that my blood pressure is fairly stable, thus I do not have 'orthostatic hypotension', but rather just POTS. Also, I have read past posts on SSRI/SNRI's, and they seem to be hit-or-miss.

Has anyone had luck with SNRI's? If so, what type of POTS do you have (ie. does your blood pressure drop? Do you have high norepinephrine? Hyperadrenergic?) I am quite confused, because in the article, "The postural tachycardiasyndrome: When to consider it in adolescents" by Blair Grubb (http://www.dynakids.org/Documents/pots_article3.pdf), effexor (venlafaxine) is used in both 'Partial Dysautonomic' and 'Hyperadrenergic' POTS. Wouldn't an SNRI harm a patient with hyperadrenergic symptoms (as the norepinephrine is high already)? Utterly confused...

If you're my serotonin and norepinephrine levels (blood/serum) are already elevated what does he say about Serotonin Syndrome? I mean I know this is usually caused by taking several drugs that increase serotonin. But I'd want to make sure that if your levels are already high that you wouldn't wind up with Serotonin Syndrome.

My personal experience with this drug was bad but I have trouble with my BP and must take salt tablets to keep my BP up. If You've never had trouble with low sodium levels it might be okay on that count. ALhtough I would still watch your salt levels and BP. As it can lower your sodium levels.

I'd talk about this with more with the doctor before going ahead with it. If you did go head with taking it,Id make sure to ask about Serotonin Syndrome, and keep track of your sodium levels and BP.

I'm starting with a new GP. Which I am dreading. But anyway, I have to tell her about POTS and I'm sure I 'll have to explain it to her. My experience with this is not good. Usually they listen and kind of half believe you. They understand when you say Postural Orthostatic tachycardia Syndrome. But what they understand usually is, that when you get up and you feel faint. They equal it to Orthostatic Intolerance. And we all know it is much more than that. the only problem is how to get this info to the doctor so she'll accept it as fact . I remember some time ago, a place, I'm not sure if it was here or somewhere else, had pamphlets explaining POTS and it's symptoms, that you could send for and they would send you so many to hand out to your doctors. I was wondering if anyone recalls this? or where this was? It would really help me to have something written by medical professionals to give to this new doctor. And also my other doctors. ( and a couple family members;) any help appreciated.

I was prescribed Restasis (Cyclosporine) from my eye doctor due to very dry eyes. I've been taking it a over a month.

But I have noticed my BP is lower than usual. I'm wondering if there could be any connection. I read little about Cyclosporine, it is not only used for the eyes but also Cyclosporine is used with other medications to prevent transplant rejection (attack of the transplanted organ by the immune system of the person who received the organ) in people who have received kidney, liver, and heart transplants. I've also read that it is given to arthritis patients. I think the main thing is it helps inflammation.

It also says- to tell the doctors about any meds even supplements as some might interfere with the medicine.

My doctor never asked about my supplements.

I'm just curious about this med because I was thinking of it as just eye drops and now I find my BP is lower, and I'm wondering if there's any connection.

So I'm concerned about this med. I remember a few years ago three different doctors had given me meds that lower salt in the body, even though I told them I took salt tabs to raise my BP. I had to research them before I found out. By then my BP was so low I was barely able to get out of bed.

Also, I am just getting a new GP. And I know I'm going to have to explain what POTS is,and I'm not sure how they are going to be with that.

For instance, Beta Blockers usually lower the BP in a normal person but it can raise BP in POTS people. Now if I tell this new doctor this I'm probably going to get a yeah right attitude.

But I thought if this is the case with Beat Blockers, then maybe this med, Cyclosporine, which is know to cause High BP in normal people, can also have the opposite effect on POTS people.

So I figured I'd come here and see if anyone has had any experience with this drug. And if so, what effect did it have on you?

Hi Jonathan,

One of my doctors did not want to prescribe one because he said it would make me lazy and not try to be up and about as much as I could.

I do have one, a different doctor prescribed it for me. I only use it rarely, like when I am in a bad exacerbation or I am having testing and I know I'll be wiped out afterward. I also have a walker. I only use the walker occasionally, when I am in a lesser exacerbation. It has a seat on it so I can sit when I get tired. I will also take that when I have to walk a distance.

Like everything else, it just depends on how much your doctor "listens" to you.

Angela

Ugh that's frustrating isn't it? The doctors just assumes you'll be lazy about it. Most people would rather not have a wheel chair if they had a choice!

I had one prescribed for me when I first aws diagnosed. I could hardly get out then. I had to have my Mom push me and even then I got motion sickness. After that when I started feeling better. I kind of used it as a walker. I would push it and lean on it and then I would sit down when I felt ill. I then got a walker from my uncle that has a seat. That thing is great. I can walk around and yet I always have a seat just in case. I do such more more with it than I would without it . Oh Medicaid covered the cost of the wheelchair . It wasn' t the best but it served it's function.

I've been wanting to volunteer lately but I got problems again. I had to get surgery today..minor but still puts back the volunteering.

Anyway I was looking online and I found some sites that take donations of crocheted and knitted items and they give them to hospitals, etc. Places that need them.

Here's a site that it very good because it gives the names of places that accept donations and it also gives lot of patterns.

http://www.bevscountrycottage.com/peds.html

I know there are other sites that accept things like toys and other sewn objects. These places have a directory of a bunch of sites.

http://www.craftsitedirectory.com/charities/index.html

http://www.craftbits.com/crafts/charity

Most of them are for crocheting and knitting but I know this one has sewing as well.

http://ww2.kcd.org/staff/stringfellow/stitchforacause/

This one is unique , It involves making polymer clay bottles.

http://www.bottlesofhope.org/

I just thought this might be helpful to someone looking for something to and that contribute to a worthy cause.

Susan

Kuji-

What a lovely voice you have & eclectic interests and talents! You are so right that creativity helps get your mind OFF of your illness and totally wrapped into something else. I've also seen some of Jennifer's sculptures- gorgeous!!! Like Maggie, I want to re-explore some of the creative things I did when I was younger, music, art, acting, writing fiction.....

My son is very creative. He writes and performs (sings and plays guitar) his own music. This summer, he worked at a local music studio (through a UGA internship) and he learned to professionally RECORD music. This is his 1st attempt at recording one of his originals:

http://www.myspace.com/mackgregory2

Regardless, cool thread. I couldn't agree more. We all need to focus some of our energy into whatever energizes us.

Julie

Your son is really talented!

Susan

I like doing creative things, when I can, to relieve stress. You can show off your art and musick and everything else. Its a nice way to relax and share things to take your mind off of illness.

I practice some animation recently. I've never animated clothing before, but I think my first try is pretty okay. I also sing the song in that clip.

That's just one of my recent creative endeavours. I'm actually making a full animated opening to a song I will sing that my brother composed to.

Here is the instrumental of the song, Binding Fates:

Well I hope to see some art or musick or videos from the creative folks here. I really enjoy looking at others' creativity outlets.

Very nice animation. I know that's a lot of work that goes into that small clip. I'd like to see more if you have it. I'm interested in animation myself. Well I'm interested in anything creative.

This is my first ever attempt at animation few years ago..It's just a silly thing I made with my cat.

But i've only done a few slides shows since then for family as far as animation goes.

But I do lots of creative things. it does help to have that outlet. I've been drawing and painting since I was 13. I don't have a site anymore but I have an album on photobucket so I'll share that here.

http://s118.photobucket.com/albums/o88/babu357/my%20art/

Susan

When I am in social situations where there is more than one conversation going on around me or too much movement, I become over whelmed. I get disoriented, dizzy, headache, unable to think. Just to name a few symptoms. It is hard to explain. This happens alot in restaurants. This weekend I was in one of these situations at a business meeting. After 5 minutes I got this look in my eyes and on my face, my mom said it was as if she was looking at my severely autistic cousin. Then I began to tear up and couldn't stop. Does anyone else get this? Is this a normal dysautonomia response? Which doctor's attention should I bring this to? How do you handle these situations? I appreciate any input. Thanks, Chrissy

Like if I was looking at a pattern that was too noisy it would seem to move, pulsate, Like an optical illusion. Usually that's when I was in someplace with florescent lights..those things are horrible! I was in a partial hospital program once and the lights were so bad I had to were a baseball cap to keep the light out of my eyes or I'd get sick .And if I went driving in the winter. the light of the sky coming through the trees as I drove would make me sick. I also had and still have trouble if I"m sitting in an office that has blinds. I always have to ask someone to close them or I get this strobe light effect. And I hate crowed noisy restaurants so I avoid them. So in short- sensitivity to noise and light . YES.

You might make some mental notes of what effects you and try things to adjust for it. For instance,. If you're in a crowed restaurant with lots of movement around you. Sit on the side of the table where you can face a wall, if it's possible.

If you have to go out for a business meeting is there anyway you can put your input in on the venue. That way you can avoid busy noisy places.

I also notice closing my eyes helps. Of course if you are in a business meeting that's hard to do, but if you just say you have a headache that should be understood.

Some of the things I did were,

Like I said wearing the cap under the florescent lights. I used to wear tinted blue glasses to read..For some reason I heard that helps people with CFS read. And it did ease the strain on my eyes. Also sunglasses to drive helped. Taking frequent breaks helps. If you feel overloaded already, and feel people won't understand you could always tell them you have a bad headache. That way if you need to close your eyes , go put water on your face and take a break they would understand.

Another thank you to now what for putting into words that which right now I too believe but could not express!

I too struggle with disability and yet the yearning to do for others.

What I now do is volunteer as a CERT "emergency preparedness" educator. (community emergency response team)

As I am able and around and about if the appropriate opportunity comes up in conversation with someone I always have the opportunity to share the importance of "Planing & Preparing for emergencies" and I carry small pamphlets to give them if they are interested.

Since I was always carrying water, food and POTS emergency supplies this was a very natural and easy thing to volunteer for!!!!

I still get lots of both spoken and unspoken pressure and judgement from those who want me to do more but I am doing all I can.

What matters is that we are trying to make a positive difference in the world. It may be just one small deed or one hour but it does add up!

thank you.

It's good to be able to come here and get this support..because like you said, you do feel unspoken (and sometimes spoken) judgment and pressure from others. I guess we have to learn to ignore that somehow. Which is not easy.

It's great that you found something that you can do to help.

That's great that you're trying to volunteer your time somewhere. Don't let those negative environments discourage you. There are sooo many volunteer opportunities out there, many different types of work, and I really think you can find something that fits your health needs. It may be doing some paperwork or something like that for a non-profit organization. Something less physically intense right now. And you just have to screen the place before hand. When you call say youre looking to volunteer some time, but due to medical conditions, you're looking for something like you stated, flexible, when you don't have to be somewhere or do something at a particular time, and tell them how many hours a week or month, etc. you are looking to commit. There are also alot of organizations that you can contact online, and even some volunteer work you can do online, depending on the agency.

I actually am currently on disability, not well enough to even work part time yet or drive. And a young adult cancer agency had asked me if I had wanted to help with an event they were throwing. That was physically too much for me, but i asked if there was anything I could do from home, and told them depending on how i feel, i might not always be helpful certain weeks. But they sent me up with a simple task, once a week, reading thru a bunch of articles that get sent to them, and picking out the good ones for them to see. It sounds not that important, but they said it's an important task that often gets put to the side, so they're happy to have someone do it now. My point in sharing that is maybe a place that has something like that, some paperwork or project that's been put on the backburner cause they dont have time to do it, so having someone help with that is wanted, and it's not anything urgent or requires a set day of work.

You mentioned NJ. I don't know if you're close to Bergen County at all. But there's a number for a Volunteer Center, I think where you call up and they can tell you different volunteer opportunities. If I'm wrong, I'm sorry,I have like 100 agency numbers in my book, cause i had to look for a lot of social work resources for myself. the number is 201-489-9454, and maybe they know of another group that's in your county if you're not close to Bergen. or maybe they can tell you how to find more opportunities. Also, the Division of Vocational & Rehabilitation services is an agency that helps people w/disabilities find jobs, it's meant to get people working, but you might call and see if they'd help you find a volunteer position to suit your health needs. ADA is the law that protects people with disabilities from job discrimination, but not sure if that applies to volunteer work. And you have to meet ADA's definition of disability.

Something else you might be able to do on a drop in basis is hanging out with senior citizens at a local nursing home. Other big non profits, like the American Cancer Society, have a bunch of different volunteer opportunities and if you call and tell them you want to help, they might give you the local # to your branch, and see if they need office or phone help, or whatever. Look online at some of the nonprofit websites and there's often a link for volunteer opportunities. Good luck and try not to let the negative people bother you, you don't want to volunteer in an environment like that anyway!

......That's great that you're trying to volunteer your time somewhere. Don't let those negative environments discourage you. There are sooo many volunteer opportunities out there, many different types of work, and I really think you can find something that fits your health needs. It may be doing some paperwork or something like that for a non-profit organization. Something less physically intense right now. And you just have to screen the place before hand. When you call say youre looking to volunteer some time, but due to medical conditions, you're looking for something like you stated, flexible, when you don't have to be somewhere or do something at a particular time, and tell them how many hours a week or month, etc. you are looking to commit. There are also alot of organizations that you can contact online, and even some volunteer work you can do online, depending on the agency.......

Thanks so much for the support.

I don't live near Bergen County but I'll give the number a try and maybe they have something near me. Yeah that's true if the people aren't going to be understanding then I dont want to work there anyway.

I found this site that you can look up volunteer jobs near you.

http://www.volunteernewjersey.org/vnj/

I haven't found anything that is custom made for me .But there are a few I might try and reply to.

thanks for your help.

Something I did when I lived in CO. I LOVE making jewlry and needed beads and jewlry parts. I volunteered at the Humane Thrift Store and priced their jewlry. When anything came in broken or beads were loose - they let me put them all in a bag and the manager priced the bag and I got alot of stuff to support my creative habit. I could go in whenever I wanted and work for however long I wanted. I was in a room by myself and able to sit down. They knew I had issues and made me very comfortable and I really felt appreciated. Since I'm real familiar with jewlry and gems it was my forta and very enjoyable. They even gave me a recommendation letter in case I wanted to volunteer again where I moved. Since it has been a long time since I've held a regular job - this will come in handy.

They would have let me work with the animals, but there would have been alot of up and down and that wasn't do-able, but the thrift store was. I really miss my time working there.

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.

Let me know if you find something. I personally would love to work/volunteer in a museum since my background is cultural anthropology. Let's both find a creative job involving something artistic and/or cultural!

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.