#Pain #ChronicIllness #ChronicPain #LupusNephritis #Lupus #RheumatoidArthritis #pericarditis #NearDeathExperiences #alive #Medicationstruggle #Medication #feelsgoodtobehome #Hospital #Injection #Injections #FlareUps #Reddit
I’ve been having a very, very hard time lately. Six months ago I almost died in a serious car accident. I survived, but suffered a TBI, a few broken bones, and other injuries.
The depression I’m experiencing now is overwhelming. I have a high level of anxiety being around my family. So much so, that I stay in my room and cry when they are all here. Which is very often.
In addition to the physical pain that I have because of the bodily and brain injuries, I am feeling an overwhelming emotional pain. Anxiety attacks also lead to tears. The depression makes it hard to do anything. As such, I’m staying in bed a whole lot. My body is starting to hurt. I feel like this is from the emotional pain but also from the lack of movement.
Does anyone have any ideas or strategies for moving my body even a little bit? I tried to do yoga today and it had me crumpled on the floor in tears. How can I motivate myself to gently move for the sake of my whole body health? #TraumaticBrainInjury #Depression
#Anxiety #Life #lifeflippedupsidedown #NearDeathExperiences #BrainInjury #Pain #Livingwithpain #toodepressed
Hard to believe there's snow on the ground already, it's 6-8 weeks early as we usually don't get first snow on Halloween. Monday had a record high of 92° and yesterday a record low of chilly 31°, today another record low of 22° wind chill factor of 3°. Colorado weather is known to change very rapidly, typically don't have more than 3 weeks of Fall weather, but thus is extreme even for us! Of course weather change is hard for many of us who deal with chronic pain and makes it hard to find the motivation to get out of bed. While pondering the crazy weather and reading Isaiah 40 in my devotions, the similarities with how my health has been this year came to mind. Have some good days but this year has been punctuated by many emergencies and unforseen crisis. Have literally nearly died half a dozen times this year mostly between infections and severe blood loss anemia. It's hard when you have to have the hospice and end of life conversations at 28 years old,... Routine labs today showed i need another transfusion, only been 6 days since my last one. Seems like i can never build momentum with the cycle, jumping from storm to storm. I am so glad that the One who controls the storm is my best friend! Thanked Him today for the snow that reminded me that though things look bleak, He has always been, and will be, the great I AM. Whatever my need, big or small, He is ______ so tonight I leave my pain, the crisis, the uncertainty, in the palms of His very capable Hands. I've trusted Him for my eternity so why not the journey? Isaiah 40:12, 26, 28-31Who hath measured the waters in the hollow of his hand, and meted out heaven with the span, and comprehended the dust of the earth in a measure, and weighed the mountains in scales, and the hills in a balance? Lift up your eyes on high, and behold who hath created these things, that bringeth out their host by number: he calleth them all by names by the greatness of his might, for that he is strong in power; not one faileth. Hast thou not known? hast thou not heard, that the everlasting God, the LORD, the Creator of the ends of the earth, fainteth not, neither is weary? there is no searching of his understanding. He giveth power to the faint; and to them that have no might he increaseth strength. Even the youths shall faint and be weary, and the young men shall utterly fall: But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.
My fellow mighty warriors, how has your year been so far? Are things uncertain? I ask you to join me in casting ALL our burdens to the Lord, we were never meant to endure alone. May the God of ALL peace and comfort give you rest tonight and may you rise up tomorrow with wings as Eagles. #ChronicIllness #Upallnight #Pain #ChronicPain #Anemia #Sepsis #NearDeathExperiences #Dysautonomia #Gastroparesis #Christianity #jesuslovesyou #TheBible
Trigger warning ahead:
I have Hidradenitis suppurativa, Stage 3. It is a chronic autoimmune disease with no cure. It has been untreated my whole life. It started when I was about eight years old. I am thirty-five now. I am terrified and humiliated to tell my story. But it needs to be heard.
My groin and thighs are covered with boils. My father would restrain me and stab thumb tacks into the boils before he raped me. I have never asked a doctor about them. They are a constant pain, making it difficult to walk. Nothing helps. They never go away. Most of my past partners would act disgusted by me and tease me and shame me about my HS.
I finally broke down this week trying to figure out what else is possibly wrong with me. Or at least what is causing my chronic fevers and plethora of other horrible symptoms. They look awful. When I came across the HS diagnosis online, I was shocked. I had always just brushed them off as bad ingrown hairs that I needed to simply endure the pain from. I was so thankful to find out that it is not from being unhygienic. I could not go see my PCP because of my fever and COVID-19. So, she said to get to urgent care asap. So, I went, and they sent me to the ER immediately.
The whole team was female. The doctor told me not to be ashamed or feel dirty. And she said she was proud of me for taking this big step in "coming out" about this horrible disease and the trauma. Because of the depth of the skin scarring and lesions I need reconstructive surgery and skin grafting. I am so scared. I would rather have any other part of me under the knife again. I do not know how to face this alone.
I also have Rheumatoid Arthritis, Trigeminal Neuralgia, Occipital Neuralgia, Crohn’s Disease, Fibromyalgia, Ankylosing spondylitis, EDS, CPTSD, an inoperable brain tumor, and Endometriosis. I just had emergency surgery that saved my life and removed two of my infected organs last month. And two years ago, I had brain surgery. I am so tired. I cannot handle another surgery on top of the others I need this year. I am also a fulltime student. And my grandfather just passed away from COVID-19. The immensity of my grief is endless.
The shame I have felt my whole life over this is unbelievable. Just the condition alone without the trauma is enough for anyone to feel enormous shame. The doctor said I must do my best to stop self-shaming and saying that it is gross, that I am gross.
My rheumatologist is starting me on Remicade chemotherapy infusions in a week. We hope it will lesson the HS, RA, and Crohn’s to a bearable level. I do not want to be alone anymore. I just want hope and I have none left.
#HidradenitisSuppurativa #HS #HidradenitisSuppurativa #Surgery #braintumors #PTSD #Trauma #Trauma #TriggerWarnings #CheckInWithMe #alone #Abuse #ChildhoodTraumaSurvivors #Chemotherapy #COVID19 #Grief #Grief #NearDeathExperiences
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3 years ago I was diagnosed with Brugada Syndrome which causes Sudden Adult Death Syndrome after briefly dying in my living room. I'm grateful to be alive and every day is a blessing but now I have crippling anxiety and its taking a toll on my life and relationships. If anyone has any tips or advice I'd love to hear it because I'm hanging on by a thread :/
#Anxiety
#BrugadaSyndrome #NearDeathExperiences
Sorry for the long post, kind of an intro, kind of a seeking support, mostly a vent/rant, not really a way to TLDR this though
In my process of trying to get pregnant (3.5years) we went to an infertility specialist, she had me go for some testing, where they found I have a blocked left fallopian tube, and my ovaries had endometriomas. I had been trying for over a decade to get someone to take my period pain seriously and agreed to have them go in remove the endometriosis. They preliminarily deduced that it likely had spread to other organs.
Background: I have 1 runted kidney, scoliosis, lordosis, a bulging L4-5 disk, partially bulging T1-2 and T2-3, chronic unknown cause migraines, bells palsy (initial occurance in May), unknown cause muscle/nerve issues in my left leg, left lower back, and left fore-arm. I am hyper-mobile (31yo and can stick both feet behind my head when my body is not otherwise in pain) and for 2 years I have suspected a connective tissue disorder. my belief is ethler danlos syndrome, for which I got laughed out of the geniology office after missing the test for it by 1 point, and she didn't run any others.
They scheduled my procedure as out patient on the 30th, laprascopic, as would normally be scheduled. With the concern of a connective tissue disorder (my gyno was the first to take that concern seriously) she ordered an echo of my heart to check for aortic problems. They found some minor (like barely detectable) excess fluid on the heart, but nothing else was wrong, my new cardiologist cleared me for surgery.
My surgery went ahead as scheduled Sept 30th, they cleared the endometrioma from my right ovary, the outside of my uterus, the outside of my bladder, and a small bit on my abdominal wall. They did not detect any on my fallopian tubes or GI tract. They drained the endometrioma from the left ovary prepping to remove it at some point, but did not get to removing it because of course, something went wrong.
My left illiac artery developed a tear and started pumping blood into my abdominal cavety. They sliced me open belly button to groin and sutured the tear, the sutures tore, then they got the next set to stick. They closed me up and sent me to recovery. Where they decided to also keep me overnight for observation.
Overnight I developed a thrombosis (clot) and had to be taken for emergency surgery the next day. By mid-day I'm under the knife again. This time they had ambulanced me to the other location for the hospital which had the trauma 1 center with the imaging equipment in the same room as the surgery theater. My father (an anesthesiologist and intensivist) said this single decision probably saved my life.
(see comment for the rest)
#Infertility #Pregnancy #Surgery #Endometriosis #clot #stent #almostdied #NearDeathExperiences #Depression #MentalHealth #Anxiety #frustration #Insomnia #Scoliosis #lordosis #bulgingdiscs #nervepain #BellsPalsy
I was in a horrific car accident July 23, 2018. I died at the crash scene, but they were able to resuscitate me.
You know what I remember being asked in that moment?
How did you love?
Not who, or why, or what, just how.
There is not a single thing that I can think of even if I live a billion more years that feels as good as death does. I know that sounds terrible, and I get that. But it’s such a unique feeling, and it’s very calm and peaceful.
#CarAccident #dying #NearDeathExperiences #Afterlife #Howdidyoulove
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