Superior Mesenteric Artery Syndrome

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.

I’m getting my Hickman line removed tomorrow and I’ve already been nervous about the procedure itself but I wish the hospital would stop giving me so much different information. First they tell me I need a COVID-19 test, now they say I don’t. Then they say no one will be able to come with me to the procedure, now they say one family member can. They told me I can’t eat or drink 8hrs before the procedure but now they say I can. They told me I don’t have to get blood work before the removal, now they saw I have to. In the outpatient building that has a lot of traffic going in and out. They told me to get there a little after 9, now it’s 8:30 for labs. I’ve also only now been told I have to stay an hour after the line removal.

It’s frustrating because this is already hard with my anxiety and it feels like it once I’m told one piece of information and I get used to it and form a plan in my head for it they change it and I can’t seem to keep up. I think they need to have better protocols and less contradicting information. #Anxiety #GeneralizedAnxietyDisorder #ChronicIllness #SuperiorMesentericArterySyndrome

Each year, across the world, the last

day of February is marked as #RareDisease Day;

it is a day set aside to raise

awareness of over 6,000 rare diseases.

What

is the definition of rare? Something not occurring very often, something

unusually good or remarkable. However, in our home and many homes like ours,

the definition of rare is dramatically altered.

My

daughter, Jayde, lives with #PosturalOrthostaticTachycardiaSyndrome, #EhlersDanlosSyndrome
, #SuperiorMesentericArterySyndrome, and Nutcracker

syndrome. I have #PosturalOrthostaticTachycardiaSyndrome, #EhlersDanlosSyndrome, and Tarlov Cyst Disease. Except for #PosturalOrthostaticTachycardiaSyndrome,

all these illnesses are rare diseases.

With

each diagnosis, the word rare took on an entirely new definition. Rare means

doctors are dismissive, shying away due to their fear of not wanting to admit

they do not understand. It is being told your disease is only in your head,

overcome it, and your disease will magically disappear. Rare is living with the stares and assumptions of others that you are

anorexic or faking your illness. Rare is being scolded, “Do not label your

child.” Rare is nails on a chalkboard each time you hear, “Get well soon.” Yes,

it is a kind sentiment. So why is it annoying? Because your head knows, there is no cure, even though it is your heart’s greatest desire.

Rare

is the isolation you feel after losing the majority of your friends because

they cannot understand your reality. It is also finding a tribe of people who

appreciate and accept you for you because they live in the same tormented hell. Rare is the pill

case with five rows for each day of the week, ensuring you do not forget to take your medication. It is

becoming more of an expert in your illnesses than most doctors. Rare is

the mask you don for the world to see, smiling on the outside while your body is searing in pain. Rare is the frustration

of needing medical supplies, but you cannot purchase those supplies due to a

virus outbreak causing mass hysteria. Rare is a rolling cart in your living

room, full of medical supplies, an IV pump, and a sharps container. Rare is

closing your eyes, waiting for the sweet relief of sleep, waking each morning, praying the new day will be better than the last. Rare is the terror you

experience when a new symptom rears its head, hoping it is a fluke and will quickly

vanish. Rare is comprehending, you are considerably different, with the consuming

desire to be like everyone else. Rare is the heartache that comes from knowing

you will not graduate with your senior class because your surgeries and illnesses have made it impossible to keep up with school. Rare is

buying the concert tickets, hoping you are well enough to attend the show six months

later. It is mourning the life you can no longer live while learning to

celebrate the mundane and smallest of victories. Rare is discovering

there are only three doctors who specialize in operating on your spinal

condition. It is the six-hour flight across the country in excruciating pain

and no sleep, so your daughter can have her wish granted to photograph the

California Coast – and knowing you would do it again to see the sparkle in her

eyes.

Rare is having your child’s diagnoses

unlock your own medical mysteries. It is then living with the knowledge and

guilt that the genes you passed onto them, is what makes them ill. Rare is the indescribable symbiotic bond you share with your daughter from needing to be more

than her parent. Rare is a multitude of rollercoaster emotions, from fear and hope

to elation and #Depression.

Rare means digging deep and finding the hidden reserves of strength and determination

to press on. Rare is living a life bathed in prayers, hopes, and wishes.

Rare is my daughter, rare is me – Rare is us