** 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 My new doctor is a dinosaur with quite outdated information but he was open and receptive to new information that I had printed out and brought to him.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 .
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 🧂 💜
Hi, my name is jswanner. I've been diagnosed with PoTS and Gastroparesis on top of multiple other GI and cardiac issues. I’m here to meet others going through the same thing and to learn more about chronic illness.
#MightyTogether #Anxiety #Depression #Dysautonomia #Gastroparesis #GastroesophagealRefluxDisease #ChronicOrthostaticIntolerance #InappropriateSinusTachycardia #PosturalHypotension #OrthostaticHypotension
Everybody has a game plan for their life. Some people plan to go to college and get a degree. Some are adamant they will carry on the family business. As a child, you may remember thinking you wanted to be an astronaut or a ballerina. For me, I have always had big goals for my life. I was certain that I would go to college, finish with honors, and become a teacher. I had not considered that sometimes goals cannot become reality.
After graduating high school, I was starting college and working full time in a local factory. I could work all day, and still have plenty of energy to spend time with friends and go out. My friends and I would go out hiking on the weekends, and drive around for the fun of it. I was still on track for my dream of being a teacher, and felt like nothing could stop me.
When Everything Goes Wrong
After a few months of feeling great and doing essentially everything I wanted to do, I started to develop some non-specific symptoms. I had a headache and was tired all the time. My doctors were determined to figure out what was wrong. I made every life change possible, tried each medication that was suggested, and underwent countless tests. Meanwhile, the pain was increasing and I was so exhausted I could hardly get out of bed in the morning.
Now, several years later, I am still in pain daily. I have a laundry list of diagnoses and still no clear reason for what is causing my chronic illness. Whereas I was once able to go anywhere and do whatever I wanted, now I am limited. I can no longer drive, and have to plan every day around my pain levels. I cannot go out and work a regular 9-5 position as I would like to do. There have been many times when thinking about everything that I’ve lost, that my mental health suffered and I wasn’t sure where to go next. So, what do you do when your life goals change?
Ways to Cope
### There are a few ways I have learned to deal with my chronic illness and mental health struggles throughout the years. First, look for what you can still do. While I was not able to finish college and become a teacher, I am still able to share my knowledge with others and teach through my platform. I can support my community and volunteer. I am able to make money and support my family.
Second, focus on your strengths. I have the ability to write. I have an innate ability to look at words and piece them together in a unique way. Proofreading and finding errors comes naturally to me as well. I thrive on listening to others in order to figure out their needs and how best to support them.
Third, focus on caring for yourself. While the mention of self care normally brings images of face masks, painting nails, and hot bubble baths, it encompasses so much more than that. You can support yourself by saying no when your pain levels are too high. You can keep a bottle with you and drink water so you stay hydrated. Sometimes, the best self care can be taking a nap and trying again tomorrow.
The last way I deal with my life goals changing is through leaning on my friends and family. Everyone needs a support system, a group of people you can go to when life gets hard and everything feels like too much. You can be the toughest person in the world, feel invincible, and yet still need your people. They will listen to your struggles, empathize, and help you plan for the future. In return, you can support them in the same way. The empowerment this gives is unmatched.
Though life goals can change and frequently do, it doesn’t have to be the end of the world. By accepting your limitations, and making adjustments for your health, you can survive and even thrive. When times are tough, slow down and focus on how you can best care for yourself. Look at what you can still do, and do it to the best of your ability. Lastly, lean on your friends and family. Together, you can get through anything.
#ChronicIllness #alliewritescreatively #ChronicPain #Syncope #Migraine #OrthostaticHypotension #OpticNerveHypoplasia #howtocope #Acceptance #whenlifegoalschange #Disability #ChronicDailyHeadache #chronicmigraine #Writing #writingastherapy #selfcare
Hi, my name is alliewrites. I am the owner of the company AllieWritesCreatively where I share my work and offer various writing services. I'm here because I have been battling chronic illness and mental health issues throughout my life. It is therapeutic to write in order to raise awareness and support my family.
Hi, my name is Aisling! I am here because although being young (18) my health has taken a turn for the worse, especially within the past year. I am struggling with coming to terms with the fact that I am now physically disabled and will be for the rest of my life and that my future won't exactly look like the way I've planned. I wish to find a community of people I can relate to and talk to about our daily struggles of chronic illness and chronic pain, along with the mental health aspects of that. I have been diagnosed with hEDS, MCAS, POTS, chronic tachycardia, chronic hypotension, migraines, ASD, anxiety, and phonophobia. I also have chronic acid reflux, insomnia, chronic fatigue, sleep attacks, and something wrong with my nervous system that my doctors are currently trying to figure out. I currently use a cane in my day to day life as well as an assortment of compression wear, joint braces and the like. Hope to find connections here! Feel free to reach out:)
Hi, my name is Kat_EDSlife. I'm here because I’ve read many articles that helped me feel like I wasn’t alone. I have a very complex health life, my husband has a very complex health life, and my son is 6 and already starting his complex health life.