Orthostatic Hypotension

I'm so jazzed! I've had so much fun making memes during this adventure, and I'm so glad I get to share them!

Here's the link!

themighty.com/topic/postural-orthostatic-tachycardia-syndrom...

#PosturalOrthostaticTachycardiaSyndrome #Dysautonomia #AutonomicDysfunction #LivingWithPOTS #POTS #OrthostaticHypotension #ChronicIllness #Syncope #laughsoyoudontcry

** disclaimer I use talk to text to type so I apologize for any errors. I try to edit the best I can but with my brain fog it doesn't always catch everything.

Has anyone else had any luck in getting treatment for their POTS with IV fluid? At this point I'm so dried up I don't even think they'd be able to find a vein and get an IV in without blowing me out but I am so desperate for water and salt. My new doctor is a dinosaur with quite outdated information but he was open and receptive to new information that I had printed out and brought to him. If anyone has information to share on a treatment plan they use or any information that would help I would greatly appreciate it!

I'm Headed back to the cardiologist today. I Didn't get much sleep last night feeling so anxious and desperate for water and salt (and food) and anticipating how I would be dismissed by the doctor again and how I should handle it.
Right now I'm trying to get cleared by the cardiologist for sedation so we can find out what's going on with my gut and why I can't get more than 20 oz of liquid and 2 tablespoons of food in me in a day.
I'm now back to being in bed all day and can barely care for myself anymore and I've had to have family come in to care for my kids this last week. I feel like I'm wasting away day by day and don't know how to get anyone on my medical team to help me.
I have POTS and my new cardiologist I saw two weeks ago also diagnosed me with orthostatic hypotension as well. After explaining how I can't keep water down and what the vomiting is doing to me he agreed that if I could get an IV of saline in me a day my autonomic nervous system would work better allowing me to move around more allowing my stomach to work better, everything gets better with the water and salt. so gratefully we are on the same page there but then he asked me to go home and keep trying to sip at my water and broth and come back in 2 weeks for further testing. And in the meantime he would try to look into how to get me some IV fluids without sending me to the ER. I have followed back up with them multiple times with no response and today I'm now going back at the two week mark and for a echocardiogram and a two week monitor...
I'm feeling really anxious he's going to send me home with no solution to how to get water and salt in me and I'm going to keep wasting away in bed. If I didn't have a compromised immune system and if I wasn't already battling multiple chronic viruses in my body I would go to the ER where I know they would give me fluids immediately because I am suffering from severe dehydration and a very low blood count. but going to the emergency room is putting me at so much risk and my body cannot handle anymore .
I'm looking for anyway to help myself but that is getting increasingly hard to do. I'm starting to lose hope again and the depression is definitely taking over. I had worked so hard to make the progress I had made and I'm almost back to the beginning again. I'm just so exhausted .

#POTS #EDS #Anxiety #Depression

There I am... On my bed... In the fetal position again.
My fingers covering my face as tears run into my palms from the pain erupting in every muscle, tendon, and bone in my body.
The pain is nothing new... I'm used to it, but then there's this pain... That hits every area at once and reminds me of how bad it can really get.
Then I start thinking about the future... How much worse it will get with age... All the surgeries ahead of me...
And the hopelessness comes rushing in... The frustration... The feelings of zero self worth.
Where is my place in a society that places your value on what your physical health?
I'm lost tonight... Caught in a cycle of dread and grief. Dread for what lies ahead and grief for what I've lost of myself so far.
And I wish I had someone to wrap their arms around me as I release this anguish... But the stress of companionship seems to outweigh the joy.
Who wants someone who cancels more than they show up? Someone who's always exhausted and constantly in pain?
Just thinking of it exhausts me.
For now... It seems easier to lie here... With my pain and bear it on my own.
#EhlersDanlosSyndrome #HEDS #Hypophosphatasia #softbones #MyalgicEncephalomyelitis #OrthostaticHypotension #Osteoarthritis #RareDisease #GeneticDisorder #BipolarDisorder #ComplexPosttraumaticStressDisorder

Enjoying my new compression socks this Friday. What are your favorite brands of compression socks (bonus if they’re fun colors/designs)? Have they helped you with your symptoms? How often do you wear them?

Thank you for letting me join the group. I wish you all rest, salty snacks and optimal hydration this weekend 🧂 💜

#Dysautonomia #OrthostaticHypotension #AutonomicDysfunction #bedbound #MightyTogether #ChronicIllness #ChronicPain