may-thurner syndrome

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Whirlwind

After being sick for months I’ve finally gotten diagnosed with #nutcrackersyndrome #MaythurnerSyndrome and #POTS and I still have more testing next week. I’m grateful for being able to take medical leave from work but I’m terrified to go back. In all honesty I don’t think I’ll be able to go back to working full time anytime soon. Which terrifies me. My grandma pointed out that I’m really smart and that perhaps this is showing me I need to just focus on my education and find something low impact to do part time. But I start spiraling. Where will I get insurance? How will I make enough money to cover rent and needs? What if I can’t handle it? I’ve gone from being a super busy 26 year old to basically being home bound. I am at a crossroads and I don’t know what to do. My anxiety is through the roof. I just don’t know what to do. So I end up just sitting and watching tv because I’m overwhelmed. These new diagnoses in addition to having #Endometriosis #InterstitialCystitis #IrritableBowelSyndromeIBS #Fibromyaliga is just too much. I’m just in a whirlwind and I can’t get out.

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Compression legging recommendations?

I am a teenager in college required to wear full leg compression. I am looking to see if anyone has recommendations on legging with compression that can fit an active and social student lifestyle. #MaythurnerSyndrome #LivingWithPOTS #EhlersDanlosSyndrome #teenagegirls

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Feeling the love today 💕 #EhlersDanlosSyndrome

I am very lucky to have a huge support system at work that includes a chaplain! He comes to visit us often and has helped me through the hardest year of my life. 28 days ago I had stents placed to open my iliac veins, both of which were compressed over 70% (#MaythurnerSyndrome). I am trying not to be discouraged that over the last week, my joints have been so loose I've subluxed both hips, dislocated my sacrum, subluxed both clavicles posteriorly - scary and dangerous, almost snapped a finger in half trying to use our #ADA elevator, and today have an anterior subluxation of my left collarbone courtesy of my 30-40mmHg compression pantyhose that I cannot reduce. I haven't missed a day of work though, other than scheduled specialist appointments, and was very excited when our chaplain appeared in my office this morning. I told him although my struggles are nothing like they were a month or two ago, I'm having a really hard time readjusting to my life and to work and am for some reason struggling more than when I was wheelchair bound - I didn't say it out loud but I think he knew I had so much hope then. He read aloud from memory a beautiful passage from the Bible about only taking in the Good, and then gave me these prayer cards. I hope they help someone else as much as they've helped me today. #EDS #MTS #Dysautonomia #raynauds #Anxiety #ADHD #OCD

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