Superior Mesenteric Artery Syndrome

While I am happy to announce that I am FINALLY scheduled to see a dietician one week from today 🥳🎉🙌🏻🤗 I have to admit that I am also feeling incredibly anxious about the appointment. #SuperiorMesentericArterySyndrome is a rare condition and, as someone well-versed in living with a different rare condition already, my fear is that I am going to be the most educated on the subject when I finally make it into the consult. 🤞🏻🤞🏻

I discovered in April that I've been living with #SuperiorMesentericArterySyndrome , and due to the abhorrent state of "healthcare" where I am, have been watching my health rapidly decline while I scramble solo to access appropriate and adequate treatment. I am expected to return to the remote job I absolutely LOVE on the 12th of next month, but am devastated by the reality that I will not be able to at that time. Today, I'm giving myself permission to both accept this unwelcome reality and grieve. I also grant myself the permission to acknowledge this as an opportunity to explore my passion for advocacy and writing more deeply than I have in the past.

Hi, my name is Bri and I’m a 19 year old freshman at UGA! I have multiple chronic illnesses/disabilities and am looking for friends around my age who can relate :)

#MightyTogether #Migraine #ehlers-DanlosSyndrome #SuperiorMesentericArterySyndrome #MyalgicEncephalomyelitis #PosturalOrthostaticTachycardiaSyndrome #MastCellActivationDisorder #SpinalStenosis #DegenerativeDiscDisease

Hi, my name is chronically_cole. I'm here because I have Ehlers-Danlos syndrome, gastroparesis, superior mesenteric artery syndrome, and orthostatic hypotension. I want to find braces that work, meal ideas, and motivation.

#MightyTogether #HypermobilitySyndrome #Gastroparesis

Hi, my name is Aleishasmart. I'm here because I have recently been diagnosed with superior mesenteric artery compression. I've lost 12kgs, I can't eat or drink anything during the day while I'm at work, when I get home I try to eat dinner but manage about 3 mouthfuls before I'm in agony and start dry reaching. any help or chats with other people in the same boat as me would be great xxx

#MightyTogether #SuperiorMesentericArterySyndrome

Does anyone else feel like they have to be “the perfect patient” and not bother the nurses too much when you’re in the hospital? Every time I’m here I try so hard to ask for nothing and not bother them bc I’ve heard them complain and complain about patients and then get told im their favorite. Which means they’re nice to me when in my room, but otherwise every other patient comes first because im so “patient” and “understanding”. But the reality is I’m in severe pain and having panic attacks the whole time im here. And when I have to wait 1+ hours after pressing my nurse call button - I spiral. I have the flu on top of my ulcerative colitis and SMA syndrome right now so I’m in an isolated room with the door shut and no windows! Not to mention it’s NYE and I’m stuck here instead of with my husband and children. I am so miserable, alone and scared. 😢
#UlcerativeColitis #SuperiorMesentericArterySyndrome #Flu

In 2010, I was diagnosed with my first rare disease. Its called Celiac Artery Compression syndrome and I had to have a surgery called ‘An Articular Patch’ to improve my quality of life. The surgery worked in a way where my quality of life went from 30% to approx 75%. Then in 2015, I began to fall ill again. I was diagnosed with yet another rare disease called ‘Superior Mesenteric Artery Syndrome‘. This also called for a major surgery where I had to get a bypass on my duodenum. This again improved my declining health from 20% to 70%. In early 2018, I again became seriously ill with ‘Gastroparesis‘. Living with these chronic illnesses has ruined my career, debilitated my social life, and rendered me feeling absolutely useless. Im also dealing with a undiagnosed issue where every 10-14 days I have what I call “My Exhaustion Days”. I sleep for 2 1/2 days straight, unable to do anything but get up to use the bathroom. During these 2 1/2 days I am literally rendered useless. I have major brain fog, confusion, the inability to form thoughts and sentences and just simple life functions. If I try to fight it off the “Exhaustion Days” will extend themselves until my body chooses its time to come back to reality. This mysterious chronic illness has been going on for approx 1 1/2yrs now. Defeated doesnt even come close to how I feel. I have been strongly advocating for myself for close to 12yrs and I no longer have the fight in me. I am beaten down beyond belief. I have lost so much I worked so hard to accomplish. I could go on and on with other issues that have arisen because of these chronic illnesses but I feel like those other issues can be addressed at another time. My main goal here was to explain my chronic illnesses to the best of my ability and to not get to technical (just yet).

I got my Hickman line removed today! I have been dreading this since the day I got my line placed but now I’m so happy it’s over!

So of course, things didn’t go according to plan. I was originally supposed to be sedated for the procedure but instead I was awake. Since my line has been in for a while I had a lot of scar tissue which made it harder for them to get it out. A lot of tugging and three shots of lidocaine (which I hate getting, that stuff burns!)

I didn’t feel any “pain” throughout any of it BUT I did feel a lot of pressure and almost a heaviness where they were pulling at the line. They had to get some scissors and break up the scar tissue in order for the line to come out. The part I was most anxious for was when they actually pull the line out. With a previous picc line removal it was pulled so fast I felt it coming out inside me, so I was really scared that would happen again.

The doctor told me when he was ready to pull the line out and asked him to hum while he did. He got in out in literally 2 seconds. That was the fastest part of it all.

I’m a little sore, nurses said I would be tender for a few days. But I’m proud of myself and what I’ve accomplished.