Post your Gripe

[Jubilee8269]

Thank you so much! I can't do much walking right now. And I wish I could do swimming right now. Too many open wounds. High chances of infection and lots of bleeding when I get around. Pushing myself in my wheelchair gets my heart rate up, but it's not doing the legs. I carry a backpack full of bandaging supplies on it and a cooler with a bunch of bottles of water. And lunch sometimes. I emailed my Dermatologist. Maybe they can coordinate with my primary care to get me into physical therapy to see what will work until I have my surgeries. Your post? I'm bookmarking it! Thanks again. So much.

 

[Peachy Clean Soap]

tachycardia (means fast heart rate) syndrome

Yes, simple yoga won't produce a lot of sweat, but some asanas can, so start off with beginner yoga and don't push yourself too hard. Stay away from Hot Yoga if you don't want to sweat.

Isometrics shouldn't cause you to sweat as long as you don't push it to the point that you create excessive resistance. Some isometric exercises might require position changes, but so does everyday living. If you are able and your health insurance covers it, I suggest asking your doctor to refer you to Physical Therapy or Occupational Therapy to help develop the best exercise program for you. There is a physician in Dallas who has developed a protocol that your doc may have already mentioned. If not, you may find this interesting:
https://www.medbridgeeducation.com/...uation-treatment-and-the-covid-19-connection/
And here is another good resource: Dysautonomia International: Exercises for Dysautonomia Patients

Low impact walking is a good one, as well. I know it's hard to walk outdoors in Texas this time of year without sweating, so if you can find an indoor place to walk, like an indoor Mall, that would be best. Remember the Mall Walking trend that started up back in the 60's I think it was? The CDC even has a 'Mall Walking Program Resource Guide' with annotated research.

Another low-impact and low sweat exercise is pool exercise, which even if you sweat, being in a pool can help alleviate that issue. If available near you, maybe you can join organized pool exercise classes. Maybe at the YWCA or a community pool. Some insurance companies even provide support or discounts for joining gyms. So I'd suggest looking into that, too. Sometimes just paying the fee for the class without joining the gym is a possibility, but that depends on the programs available near you. Our community center has programs like that where a paid membership is not required, but I know not everyone has things like that within a reasonable distance.

Just a few thoughts and references for you. I hope they help and I really encourage you to do get in touch with one of the support groups for POTS. Here are some links to help you find one that might appeal:

http://www.dysautonomiainternational.org/page.php?ID=24https://www.spoonsandbrainfog.com/home/support-groupshttps://www.rarediseasesnetwork.org/cms/autonomic/Get-Involved/Patient-Advocacy

Sorry about your DX. agree w/ @Arlene.
Walking & swimming are both low impact of the two swimming minimal impact and low sweat.

If you choose walking & your close to a "Mall" most Mall's open up early just for walkers. ( It's a thing) It's fun to get involved & meet friends as you have your daily stroll. Call your Mall see what time they open for walkers. I was a mall walkers for 4 yrs then I got my treadmill. best of luck to you.

 

[Janewoc17]

Got another diagnosis yesterday. I have POTs. Postural Orthostatic Tacy...taci....I forget how to spell the last. And I'm too lazy this morning to look it up. I didn't sleep last night. My gripe is....I've been telling doctors and my family for years something was wrong that way, and it took till I was 39 to get the diagnosis. And the dang heart doctors didn't even want to do the test to confirm it. They read over my list of symptoms I've been carrying in my purse, looked over my other test results, and said yeah you have it. While all the other doctors have been saying no you have to have that test to confirm it.

And the treatment is exercise, lots of water, and compression garments. Which is a good thing I know. But my autoimmune disorder basically attacks my body if I sweat. The site they sent me to says I have to get my heart up to a certain speed every day multiple times a week, but how am I supposed to do that when my other disease will attack me and leave me with open wounds and needing more surgeries if I break out in a sweat? Not all the time, but it's the root cause.

Does anyone know any good low sweat exercises? I was thinking yoga. I have to do them in a chair cause of my joints and I found two places on youtube that look decent.

Earleen’s information is spot on! You might try just water and exercise to see if that is enough intervention before trying compression garments— or skip compression during exercise only. Stupid life challenges! What you are going through must be super frustrating. I’ll bet you will figure out!

 

[Daisy]

I completely understand that and they should be thankful they are not paid by the deliveries. I am in between 2 hubs and get deliveries from both of them. Both were horrid, the pandemic hit, 90% of the drivers quit at one of them, Got Texas drivers and haven't had a problem since from that one. It's the other one I am having problems with and I just found out that they are only in our area for all of 2 hours a day. But you would figure that if something wasn't delivered on the day it was suppose to it would be one of the first the next day. Next is to contact the companies I am getting the things from and have them complain.

Something that helps to reduce sweating is wearing 100 % cotton or other 100 % natural fiber garments while you exercise. They let your skin breathe with no accumulation of sweat. 100 % bedding make a ton of difference too! Maybe if you such hard enough, you'll find natural fiber compression garments!
Best wishes as you navigate!

Search not "such"

https://www.ecosox.com/health-wellness/compression-socks/

 

[BattleGnome]

I am not the maid of honor. Why am I planning the bachelorette party? I might even be hosting it. I might be planning the bachelor party too because I just suggested guys vs girls escape rooms.

I think it’s because I’m almost 10 years older than the bride (and the rest of the bridesmaids) and the only bridesmaid already married. I also planned my wedding by myself and swore I’d never let anyone do that if I’m available to help.

I just feel like I’m herding chickens. I just want to settle on an idea so we can figure out pricing so we can figure out timing. The wedding isn’t until September and I already kinda just want to plan the party and tell people when to show up or pay me back.

 

[amd]

Ugh @BattleGnome I feel for you. I haven't had to plan a party, but I was at a party with a bridezilla. When my cousin got married 8 years ago, she had a bachelorette party complete with a party bus. Supposed to be a fancy party bus with disco ball etc. What showed up was your typical short transit bus. My cousin was not happy, there was an hour and a half of crying and calling the company before we finally left (on said short transit bus) and half of her friends bailed by then. She cried the entire time. Two weeks later she redid her bachelorette party!

 

[Catscankim]

Thats crazy. I have known a few bridezillas in my lifetime. They are totally irrational.

One forbade deodorant of any kind because of the color of the dress. Another made everybody wear super high heels, another had us wear heels according to our height.

We wont even discuss the cowboy themed wedding lol

 

[Catscankim]

I finally got around to ordering biz cards. UPS says they delivered “left at back door” at 8:55pm. Its not there.

This would have meant that the delivery guy would have had to walk around the house, through the grass, in the pitch DARK as there are no lights on the side or back of the house...instead of leave it at the front with the other three packages delivered today, in front of the CAMERA.

My thought is that he delivered to the wrong house. One does not muddle their way around a dark property in Florida...too many dangerous critters out there!!

I took a quick roam around the house with a flashlight, even then i got creeped out about what i might run into or step on. I will look again when its daylight out. Or hopefully a neighbor will drop it off.

I am so mad, especially since it took me forever to finally design and order the cards.

 

[Catscankim]

Neighbor dropped it off today. Emergency over lol

 

[ResolvableOwl]

I've had an unpleasant PM conversation with a SMF member (that I won't mention by name). An active member which I actually would like to appreciate as a well-informed and helpful contributor to this community.

I am convinced that keeping personal interpretation out of conversation (or at least explicitly distinguishing it as a such) is necessary when talking about topical things. Such a topical thing was addressing issues with the conversation style of that forum member. Not as if communication is difficult enough across technical and language barriers anyway.
But said person has repeatedly mixed up factual things with their personal interpretation, in my impression not always in best faith, and eventually overdone my patience.
Replying to me (after I had called myself a “self-critical and open-minded” person) that they have no hope to “change [my] mind”. Heck, they even had the chutzpah to accuse me of lie, without even attempting to figure out what I could have meant!

Said person is either unwilling or unable to accept that s/he has not a natural monopoly on some topics, and prefers escalation over clarification when bringing this up. I don't care if out of envy, grief, or something I don't know – but I can't know (and won't guess) as long as said person doesn't show any sign of good will/cooperative behaviour.
Instead of talking, coming back to topic, and finding out if the criticism was justified, or maybe only a misunderstanding, they suggested to mutually block ourselves, to not accidentally expose oneself to a differentiated view on the situation. Please what? That's not a civilised style of communication. I am not willing to resort to such crude behaviour, the least in a community which I like to visit to distract myself from the plenty other stupid and unpleasant things around me. There is no point in giving myself and others a hard time without reason. And if there is a reason, then why not talk about it?

Out of my natural optimism, I did not tune in into their destructive, toxic undertone (though I would have had all the right to do so). I think that a well-meaning personality should be able to keep friendly and professional things on a friendly and professional level. Thus I have kept doors open, and stayed polite and diplomatic. Was I too permissive?

 

[Garden Gives Me Joy]

Been trying to find a way of importing ROE to current location, but to no avail. It's on the restrictions list. No one will ship and can't find some inbound traveler to sneak in a bottle.

Giving up!

Chelation and extra vitamin E I suppose!

 

[KimW]

Been trying to find a way of importing ROE to current location, but to no avail. It's on the restrictions list. No one will ship and can't find some inbound traveler to sneak in a bottle.

Giving up!

Chelation and extra vitamin E I suppose!

Here's some. I don't know if it's a good price, but lotioncrafter is one of my "trusted vendors".
https://lotioncrafter.com/products/rosemary-oleoresin-roe?ETA - oh wait - I seem to recall. Are you in France, or someplace right now??

 

[Garden Gives Me Joy]

I live in a remote area. So t'was a huge deal last week when I finally got an even better precision scale. My earlier one measures grams but THIS ONE does decimal points of a gram. Oooh!

Was giddy to make soap, anything, anything at all!

Started weighing out baseoils and the battery died!

and no one nearby sold those 'fancy' lithium batteries.

 

[AliOop]

@Garden Gives Me Joy

 

[The_Phoenix]

Got another diagnosis yesterday. I have POTs. Postural Orthostatic Tacy...taci....I forget how to spell the last. And I'm too lazy this morning to look it up. I didn't sleep last night. My gripe is....I've been telling doctors and my family for years something was wrong that way, and it took till I was 39 to get the diagnosis. And the dang heart doctors didn't even want to do the test to confirm it. They read over my list of symptoms I've been carrying in my purse, looked over my other test results, and said yeah you have it. While all the other doctors have been saying no you have to have that test to confirm it.

And the treatment is exercise, lots of water, and compression garments. Which is a good thing I know. But my autoimmune disorder basically attacks my body if I sweat. The site they sent me to says I have to get my heart up to a certain speed every day multiple times a week, but how am I supposed to do that when my other disease will attack me and leave me with open wounds and needing more surgeries if I break out in a sweat? Not all the time, but it's the root cause.

Does anyone know any good low sweat exercises? I was thinking yoga. I have to do them in a chair cause of my joints and I found two places on youtube that look decent.

If elevating your heart rate to the point of sweating is a no-no, I suggest light resistance training. Done properly, resistance training is good for your physically and mentally. It helps to build muscle, stronger bones, and is also helpful from a cognitive perspective. And if you have joint issues, resistance training will help with that.

 

[lenarenee]

I've had an unpleasant PM conversation with a SMF member (that I won't mention by name). An active member which I actually would like to appreciate as a well-informed and helpful contributor to this community.

I am convinced that keeping personal interpretation out of conversation (or at least explicitly distinguishing it as a such) is necessary when talking about topical things. Such a topical thing was addressing issues with the conversation style of that forum member. Not as if communication is difficult enough across technical and language barriers anyway.
But said person has repeatedly mixed up factual things with their personal interpretation, in my impression not always in best faith, and eventually overdone my patience.
Replying to me (after I had called myself a “self-critical and open-minded” person) that they have no hope to “change [my] mind”. Heck, they even had the chutzpah to accuse me of lie, without even attempting to figure out what I could have meant!

Said person is either unwilling or unable to accept that s/he has not a natural monopoly on some topics, and prefers escalation over clarification when bringing this up. I don't care if out of envy, grief, or something I don't know – but I can't know (and won't guess) as long as said person doesn't show any sign of good will/cooperative behaviour.
Instead of talking, coming back to topic, and finding out if the criticism was justified, or maybe only a misunderstanding, they suggested to mutually block ourselves, to not accidentally expose oneself to a differentiated view on the situation. Please what? That's not a civilised style of communication. I am not willing to resort to such crude behaviour, the least in a community which I like to visit to distract myself from the plenty other stupid and unpleasant things around me. There is no point in giving myself and others a hard time without reason. And if there is a reason, then why not talk about it?

Out of my natural optimism, I did not tune in into their destructive, toxic undertone (though I would have had all the right to do so). I think that a well-meaning personality should be able to keep friendly and professional things on a friendly and professional level. Thus I have kept doors open, and stayed polite and diplomatic. Was I too permissive?

Are you asking us for an opinion....or just musing? My opinion; there's no right or wrong here. Your choice was motivated by your personality and you took the optimistic route which leaves you open to the possibility that this could end up in at least a neutral manner - if not a positive one. The alternative would just shut down all possibilities.

 

[msunnerstood]

Its been a rough few weeks. Ive been sick for over 2 weeks with odd symptoms. after a ton of tests, im grateful my issue is not the worst of what I was tested for. Im down because the severe deficiency of vitamin D means Ill likely feel like this until the high doses of D they are giving me build up. 8 weeks of feeling like this? I get it could have been something worse but knowing this continues a while is depressing me.

 

[AliOop]

@msunnerstood I'm sorry to hear that. My grandson recently went through that - his D level was at 12. Once treatment started, his improvement was immediately noticeable and steady. I pray that it will be like that for you, with quick response even if full healing takes time.

 

[The_Phoenix]

I went shopping on a Saturday at Costco. Need I say more?

 

[ResolvableOwl]

there's no right or wrong here

Not so sure. If someone thinks that their comfortable position allows them to lack basic interpersonal manners, and is unwilling to at least take into consideration a misunderstanding, and (ab)uses uninvolved third parties by giving misleading information without context, and then even blames me for that, I'm pretty sure that there is something wrong here.