chronic illness EDS

Join the Conversation on
chronic illness EDS
2.5K people
0 stories
204 posts
  • Explore Our Newsletters
  • What's New in chronic illness EDS
    See full photo

    What’s been your experience with patient advocates?

    Navigating the health care system when you have a condition like EDS can be challenging and overwhelming sometimes, especially when met with others who aren’t as knowledgeable about what it’s like to live with your diagnosis.

    But sometimes, seeking assistance from patient advocates who are educated and willing to put in work to get you the help and treatment you need is invaluable.

    What have your experiences been like with patient advocates? Did you find one that was helpful to you?

    ✅ Want some insight from a personal experience? Check out what ChristieCox has to say in recent Mighty article here:

    #EhlersDanlosSyndrome #RareDisease #Hypermobility #EhlersDanlosSociety #ChronicIllnessEDS
    #HypermobileTypeEDS #ChronicIllness #ChronicPain #Spoonie #Fibromyalgia
    #MentalHealth #Anxiety #Depression

    2 reactions 2 comments

    Counting my blessings #PTSD #chronic pain #ChronicIllnessEDS #Spoonies

    This might be long, if so I apologize. I asked my best friend to drop me over at my son's while he visits his family, which he did. I took my son and long time gf a new phone that I had activated it already. They were renting a house with another couple. That couple had his grown son and his fiance move in because they needed a place. That started this person moving in or that one moving out. Not sure why but rent wasn't getting paid so they ended up getting a summons to court (I believe there were 7 names listed as living there). My son and his gf are the only ones who appeared. I mad sure and took them. The judge gave them two weeks to vacate. My son was like, why did we go since we still got evicted. I told him "you went to hold yourself accountable. That's respectable!" When I was explaining to mom she asked how much their rent was because she was going to offer to pay it. It was to much. So today when I got to their house my son was just getting to leave to take another load to my storage that had lots of room using his bicycle and a bicycle cart. It was 36 degrees and dropping. I texted my friend and asked if I could borrow his car so my son isn't getting his stuff in storage this way. Since they have to be out by noon tomorrow he would have had to work throughout the night. My friend says, no problem. When my son got back and came in to warm up I told him I'm borrowing the car. He had the new phone in his hands looking at it and he looks at me and says, "I'm not sure who you talked to that helped buy this phone but thank you. Plus helping to make sure we get our things in storage I really appreciate all that you do to help us out.

    He has never really ever taken anything for granted because we never had much more than bill money. He has always shown me respect. I sometimes doesn't think he understands that when I became a mom I took on: what I call being a mom and it doesn't stop when you grow up. Different kids might need mom for different reasons. I talked about counting my blessings because I am grateful for every day. I could have easily lost my life when I was with my abusive ex. I'm grateful that I'm able to help each of my 3 grown children. I'm grateful I have an extremely supportive, the best friend ever and lover all rolled into one amazing man. Since I had to move out of my apartment I no longer have to wait out in the cold for public transportation. I'm very grateful for that. I'm not sure why I shared all this. Maybe I just needed to put it down in words. I hope everyone that reads this takes the time to think of 1 thing they are grateful for.

    4 reactions 2 comments

    A good update #PTSD #ChronicPain #ChronicIllnessEDS

    So my best friend and lover picked me up last night as he does every Saturday night and he massaged my back and legs really well and my thigh muscles recovered 90%. When I told him a spot that was tight he told me; "I know I used to do this when I was 19". So I'm like really you used to be a massuse and your just telling me now. Laughing about

    5 reactions 2 comments

    Physically exhausted #ChronicPain #ChronicIllnessEDS #MentalHealth

    Sorry, but I really need to complain and just...

    This is the second night that my thigh muscles are keeping me from any kind of sleep. I tried taking a nap earlier, same thing. I have multiple debilitating medical issues but this Musculoskeletal pain is kicking my butt. Typically if it's musculo pain it just makes my thighs feel heavy. I mean that hasn't changed and is one of the things I become adjusted to. But the last 2 nights my upper legs have a constant achy feeling plus at times the front side of my thigh muscles kinda feel confined.

    If this makes sense to anyone please let me know what might help. I take different vitamins and supplements due to my hEDS.

    For right now I'm staying positive and praying that God take some of this pain so I can sleep. I'm so so so tired.

    42 reactions 13 comments

    UGH!!! #ChronicPain #ChronicIllnessEDS

    Just venting a little here. I am sure there are many that can relate to how my afternoon went. So, I didn't get much sleep last night so after running errands with my daughter and grandson, I said I needed a nap. So I go into the bedroom in the basement and lay down. Every part of me settles EXCEPT my legs. The entire of both legs ached to the point I couldn't fall asleep. They didn't quite hurt but the constant aching. Then mom called (I always answer her calls as she's 82), she asks what I was doing I said laying down. She said she'd call back but I told her about my legs so we could chat. Then I had such an urgency to use the bathroom I told her I got to go. Hobbled up the steps not sure if I was going to make it. Sat down and couldn't help the; Ahhh that escaped my mouth. Go back downstairs and get comfortable, legs still being a nucense but I'm convincing myself that I can ignore my legs. Then, I have to pee again. So back up the stairs I go again, telling myself that I haven't had a drink in some time. At this point my nap was a total bomb. Hopefully I'll get good sleep tonight!

    7 reactions 3 comments

    I just wish she understood #ChronicPain #ChronicIllnessEDS

    So my youngest grandson has bunk beds in his room for him and my middle grandson (mom has every other full week) and the youngest one is having a friend over after school. My daughter asked if I could make up the bed nice (bottom bunk). Of course I did wanting to help out. Let me tell you that the boys must have over 20 stuffed animals, 10 throw pillows and I folded up 3 throw blankets. Don't forget the mound of clothes shoved between the bed and wall. I told my daughter it was done and looks nice even if I about killed my back. She's like; you hurt your back making a bed. I told her is was from all the bending. Then she did the eye roll thing. Sometimes I really wish she had to deal with my body for 1 week so she could understand I'm not making excuses!

    3 reactions 2 comments

    I believe I can #PTSD #MentalHealth #ChronicIllnessEDS

    I do believe I've found a way that will work for me to write my book. I will keep everyone here updated on my progress. Remember to count your blessings everyday!

    9 reactions 4 comments
    See full photo

    #ChronicIllnessEDS #MentalHealth #ChronicPain #PTSD
    This is me! I believe I've gotten myself to a point in my life where I can see things falling together instead of apart.

    4 reactions
    See full photo

    Feeling defeated. Anyone want to chat #ChronicIllnessEDS #ChronicPain

    I am 8 weeks out from ankle surgery. I am finally allowed out of my boot to start moving my ankle. 2 weeks later than planned because my incision was still open. I have no range of motion and it is making me feel like a failure I'm supposed to start writing the alphabet with my foot with no leg movement. I can't do it. it takes all the muscles in my leg just to move my foot up and down the tiniest amount. I feel horrible #hypermobileehlers-DanlosSyndrome(hEDS) #Surgery #Depression #ChronicIllnessEDS

    17 reactions 3 comments

    Almost to much #ChronicIllnessEDS

    Just got vent some! My lower back has been painful for going on 3 days now. Each day getting worse. My schedule has kept me busy off and on each day. Today I accompanied mom (82 years old) to her pain specialist as she doesn't hear real well and she knows I will ask questions advocating for her. Right now we are waiting for the ride back and I had to put my feet on my walker to lesson some of the pain in my back. My thighs feel so heavy and I still have to keep my back arched. I really do not like high pain days because it makes me so tired. When we get back to her place I told her I am taking a nap.