Hi, my name is VelvetMarginalia (she/her). I have hEDS, EOE, PTSD, fibro, and migraines. and I'm pursuing diagnosis of cervical instability, chron's, mcas, pots, and more. I am looking for community as my health has rapidly declined and I would love to find people who understand. I am also a mama to a medically complex kiddo, and both my kiddos have autism/ADHD. I'm also a lesbian and have an amazing partner.
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4 comments
I’m not sure how to keep going. I’ve been doing my best to live with fibromyalgia, CFS, chronic migraines, and many other accompanying issues since 2017. It all began with a car wreck in 2016 that led to a cervical fusion. Fast forward through many different treatments and surgical procedures and we get to 2022 when, after being a stay-at-home homeschooling parent to 4 kids, I finally made the choice to leave my narcissistic abusive husband and had to go to work in retail. My health was not good to begin with and working has just made me go even further down hill. But I’ve had no other choice but to keep trudging through. My two daughters (20 & 22) are both living with me due to their health problems and I have been doing my best to take charge of their care. They are both disabled from chronic physical illnesses and mental and developmental problems. We are currently waiting to see if they are going to be approved for disability benefits. Several months back I began experiencing severe vertigo and vision issues/disturbances along with worsening cognitive function, disorientation and total inability to focus or multitask. My doctor thinks I’m possibly having ocular and/or vestibular migraine symptoms. However, I’ve had to wait almost 2 months to be seen by my neurologist and have an appointment at the end of January. Unfortunately at the beginning of December I ended up in severe pain and couldn’t walk without help due to a suspected herniated disc in my lower back. I have been referred to a neurosurgeon and will be seen at the end of January. I have been put on a three month medical leave from my job and am trying to survive on the tiny bit of savings I have. The money isnt going to last for long. Due to the meds I was given for my back (multiple rounds of steroids, pain meds and muscle relaxers) I have had horrible reactions and coupled with the pain and difficulty getting around, I have been sent into what feels like a never ending CFS crash and my brain function and emotions are severely affected. The fatigue and fibro pain and autonomic symptoms are so awful I feel like I’m dying. I’m barely eating because I’m constantly nauseous and I’ve lost 10lbs since this began. I’m basically living in my bedroom and bright lights and loud sounds are quite intolerable. My doctor doesn’t have a lot of knowledge about my conditions but is extremely willing to help me in any way she can with referrals or medication that I am interested in trying, but otherwise I’m on my own. I don’t yet know if surgery will be necessary for my back, but I’m also questioning whether I’ll be able to go back to work at all when the medical leave ends. If I can’t, then I’m not sure how I’m going to pay my rent/bills and take care of my daughters. I have no idea if or when my girls will be approved for disability and even though I could apply also, the process can take so long that I’m afraid we would be homeless before I got approved. Just not sure what to do anymore and I’m barely functional which just worsens it all. #ME /CFS #Fibromyalgia #ChronicMigraines #AutismSpectrumDisorder #Dysautonomia #EhlersDanlosSyndrome #EosinophilicEsophagitis #UlcerativeColitis #MajorDepressiveDisorder #cognitivedysfunction #Endometriosis #InterstitialCystitis #HerniatedDisc #Vertigo
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Hi, my name is PurplePapalotl. I'm here because I want to live a better and more connected life than what illness has pushed me to. I'm also curious about care plans and symptom tracking.
#MightyTogether #Fibromyalgia #Asthma #EosinophilicEsophagitis
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I just want to take time to say how thankful I am to make it to 37 weeks pregnant! Due to having EDS, I was expecting to have a preterm baby(as I have in the past) but my little girl has made it to “term” and looks like she might make it to full term! I can't wait till she is here and in my arms.
In terms of my chronic illness its been a rough ride (though a textbook healthy pregnancy ) but its almost over and the joy of being a mamma again is about to begin. Thankful to God and all my loves ones who have supported me through it all!!!
#EhlersDanlosSociety #EhlersDanlosSyndrome #EDS #ChronicPain #ChronicFatigue #IrritableBowelSyndromeIBS #Asthma #migrains #EosinophilicEsophagitis
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Hey all, I am new to this group. I have struggled heavily for the past 3 years with health issues, particularly in my GI system. My 2 main conditions are eosinophilic esophagitis (EOE) and Gastroparesis. I have tried several different doctors, medications, therapies, diets, lifestyle changes, etc. Nothing ever seems to help my body's ability to reject 95% of foods. I am now down in the 90s again for my weight, and my body is worn down from throwing up so often.
It's gotten to the point where I am pretty much used to throwing up 24/7. I can deal with the throwing up, however I fear that my body can't deal with it much longer. My teeth are starting to turn clear/transparent due to the high acid exposure and my esophagus is extremely damaged from throwing up so often.
I fear I may have to look into getting a J tube placed, due to the severity of my conditions. Any advice as I try to navigate the harsh nature of these conditions, particularly how much my body rejects almost every food group?
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Hi, my name is SparklyPinkButterfly. I'm back after a few years, and looking for people who understand what I’ve been, or am going through. I previously had a different username, but unkind family members found my account, so I needed to lay low for a while. Things have just hit the fan, lately, and I need the support of people who get it.
#MightyTogether #Anxiety #Depression #BorderlinePersonalityDisorder #Fibromyalgia #ADHD #EosinophilicEsophagitis
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My daughter is using Seroquel for her Bipolar 2, but the higher the dose goes, the more negative side effects she is experiencing and the more horrible she physically feels. Her psychiatrist seems to have total faith in its ability to address her Bipolar and severe depression and anxiety despite our insistence that it may not be the best medication for her. Does anyone else have any medication suggestions for treating bipolar 2 other than the Seroquel? # #Bipolar2 #ChronicFatigue #Fibromyalgia #EhlersDanlosSyndrome #Depression #Anxiety #HypothyroidismUnderactiveThyroidDisease #UlcerativeColitis #EoE
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18 comments
My daughter is using Seroquel for her Bipolar 2, but the higher the dose goes, the more negative side effects she is experiencing and the more horrible she physically feels. Her psychiatrist seems to have total faith in its ability to address her Bipolar and severe depression and anxiety despite our insistence that it may not be the best medication for her. Does anyone else have any medication suggestions for treating bipolar 2 other than the Seroquel? # #Bipolar2 #ChronicFatigue #Fibromyalgia #EhlersDanlosSyndrome #Depression #Anxiety #HypothyroidismUnderactiveThyroidDisease #UlcerativeColitis #EoE
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18 comments
Living with my chronically ill, autistic, BPD, young adult daughter is like living with an abusive spouse ( I would know cause I lived with one for 16 years before divorcing him). I can’t kick her out cause she isn’t totally capable of living on her own and doesn’t have much income and I don’t have any family that she could go live with. She doesn’t drive either so is totally dependent on me to get her to her part time job and frequent doctor appointments. However I am chronically ill too with several difficult conditions and work full time and care for my youngest daughter that is totally disabled from her chronic illnesses and it is just too much to always deal with the continual cycle of ups and downs she goes through due to her mental and developmental diagnoses. She is on medication that is helping some to stabilize her moods and help her severe anxiety, but she still goes into really awful episodes where her thinking is all over the place and she lashes out verbally and accuses me of things that don’t even make sense. She yells and cussed at me, calls me names and says I’m stupid and don’t really love her. She does the same to her sister but on a lesser scale than with me. In those episodes I can’t reason with her and she is determined that I’m causing her problems. When she is clear headed she can be kind and loving, but she always has another episode before long that is horrible for me to deal with. I feel I’m being verbally and emotionally abused just like I was from my ex- husband. I want a peaceful life and I just can’t seem to ever achieve it due to the whole situation. Has anyone else had experience with this kind of thing? I would really appreciate input. #Fibromyalgia #AutismSpectrumDisorder #BorderlinePersonalityDisorder #chronicmigraine #ADHD #Anxiety #Depression #ChronicFatigueSyndrome #Dysautonomia #UlcerativeColitis #EoE #OCD #DisorderedEating #InterstitialCystitis #Endometriosis #IBS #FoodAllergies
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13 comments
Living with my chronically ill, autistic, BPD, young adult daughter is like living with an abusive spouse ( I would know cause I lived with one for 16 years before divorcing him). I can’t kick her out cause she isn’t totally capable of living on her own and doesn’t have much income and I don’t have any family that she could go live with. She doesn’t drive either so is totally dependent on me to get her to her part time job and frequent doctor appointments. However I am chronically ill too with several difficult conditions and work full time and care for my youngest daughter that is totally disabled from her chronic illnesses and it is just too much to always deal with the continual cycle of ups and downs she goes through due to her mental and developmental diagnoses. She is on medication that is helping some to stabilize her moods and help her severe anxiety, but she still goes into really awful episodes where her thinking is all over the place and she lashes out verbally and accuses me of things that don’t even make sense. She yells and cussed at me, calls me names and says I’m stupid and don’t really love her. She does the same to her sister but on a lesser scale than with me. In those episodes I can’t reason with her and she is determined that I’m causing her problems. When she is clear headed she can be kind and loving, but she always has another episode before long that is horrible for me to deal with. I feel I’m being verbally and emotionally abused just like I was from my ex- husband. I want a peaceful life and I just can’t seem to ever achieve it due to the whole situation. Has anyone else had experience with this kind of thing? I would really appreciate input. #Fibromyalgia #AutismSpectrumDisorder #BorderlinePersonalityDisorder #chronicmigraine #ADHD #Anxiety #Depression #ChronicFatigueSyndrome #Dysautonomia #UlcerativeColitis #EoE #OCD #DisorderedEating #InterstitialCystitis #Endometriosis #IBS #FoodAllergies
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13 comments
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