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    Self care day

    I finally took two days off work. No, I’m not going on vacation. I have an upper and lower scope of my GI system today and I decided to take the time to recover tomorrow. Taking two days off work was extra work for me, lesson planning for my students. Yet I knew I needed a day where I could rest, catch up on my own homework for my doctorate program, and just rest my body and mind.

    That has led me to the laziest morning ever. I snuggled my little girl and she fell asleep in my arms under the covers with me. My arm is asleep and numb but how can you even fathom waking a sleeping pup??

    #Endoscopy #Colonoscopy #MightyPets

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    I have a lot of problems because my EDS/other health issues and I'm having my first endoscopy soon. Any words of encouragement?

    #EhlersDanlosSyndrome #GutIssues #Endoscopy #Encourgement

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    Sick and Tired of being sick and tired...


    No one can seem to figure out what is going on with me. My body is one huge mess. In February I was sent to #ER when my PCP had my labs drawn STAT at her office because she said I looked white as a ghost and noticed that my hair had drastically thinned.

    My hemoglobin came back at 5.5 and so I ended up admitted to the #Hospital for a few days where I received a blood transfusion (2 units then). They monitored me and my hemoglobin went up to 8.3 so I was discharged & sent home.

    I followed up with my #hematologist and it was decided that I would have a #PiccLine placed and would begin a series of #ironinfusions . Since February, so in the past 8 months, I've had to have a total of 7 #bloodtransfusions (for a total of 13 units transfused).

    My #Endoscopy and #Colonoscopy showed no signs of a GI bleed. Even the site where I'd previously had a severe bleeding gastric ulcer is nicely scarred after having it cauterized 3 years ago. My #BoneMarrowBiopsy came back normal. My #uterinebiopsy came back normal. I even had the #capsuleendoscopy (#PillCam ) done to check further into the small bowel and apparently that came back normal as well.

    I've had over 30 iron infusions (have tried both #Ferrlecit and #Injectafer ) and still my Ferritin levels, Iron levels, & Iron Saturation remain in the single digits.

    They've not been able to get my hemoglobin above an 8.3 and it's only been above 8 two times (an 8.3 once & an 8.1 another time). On average, I live on a day-to-day basis with it in the 7's, but it has dropped down to 5.0-5.5 over a handful of times. It seems I've needed a #Bloodtransfusion nearly every month.

    I'm so utterly exhausted all the time. I have no energy or motivation for anything. My life consists of appointment after appointment. I basically don't leave my house unless I'm having to attend an appointment. I just don't have it in me.

    My depression has hit so hard. I isolate even more than before because I have absolutely no energy. And that only fuels my #Depression and #PTSD even more. It's like the life is being sucked out of me in all directions.

    And the doctors seem to be following up with me less and less. Like this is no big deal. If only they were the ones having to go through this...

    #IronDeficiencyAnemia #Depression #PTSD #MedicalPtsd

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    The unknown #ChronicFatigue #ChronicIllness

    A couple of years ago, out of absolutely nowhere I started to feel really nauseous. The commute to work & back was near impossible. My periods became very irregular & I became severely bloated. I was convinced I was pregnant. Forward about two months and I started getting excruciating pain - waking up due to what felt a massive karate chop to my stomach. I had all sorts of blood tests & scans. Every time I ended up in a&e I was told it was ‘that time of life’ -peri-menopause. .
    Somethings did show up in scans but apparently they wouldn’t cause my symptoms & were not flaired.
    I couldn’t walk from pain, I couldn’t eat, it would either hurt to eat or I’d get full from just a bite. I couldn’t even carry a piece of paper!! Sometimes whilst lying in bed I would feel my throat swelling up & actually couldn’t swallow. It was very scary but I thought maybe it was a sign of #Anxiety .
    My doctors thought maybe some trapped gas or stomach bug. I was given anti-acids that did nothing.
    I lost my job, I lost my home, I moved out of London to #nottingham for a slower pace, where people wouldn’t shove at bus stops &work would be a shorter commute, by then the 2nd set of different anti acids had worked. I seemed fine. Until I helped the removers with some carrying. Then it was back.
    Whilst there I had an #Endoscopy and there we found I had an #esophageal #hiatushernia - the gastric specialist had also told me there was no need for an endoscopy as he thought I had a stomach virus!! It was only when I told him my hair was falling out that he said ok.
    After the endoscopy diagnosis I was told to raise the head of my bed. That was it.
    Without carrying on for pages, (it’s 4.30 am and I have work in the morning but I was googling and found this site and I realised I really needed to pour my heart but I’m rambling! Apologies!) I ended up on two different anti acids, can not do any exercise, some days carrying an umbrella causes severe pain and a flair up of exhaustion, sometimes not, I've been deficient in iron, vitamin d and zinc, my #HairLoss has got better - the specialist and I did thing it was all the trauma in my life plus possibly one of the #antiacids
    The chronic fatigue is quite new and scary. I’m not even sure if it is my hiatus hernia that’s causing all this. Am being investigated. There is a lot of #Inflammation in my blood tests
    So yes, in my last job which I lost, if I was told to stay an extra half hour, I would have literally lost all my energy. I’ve never experienced this, so comforting to understand it here and have people that can relate! My mother was in hospital last week so I ended up having to do a lot; in the past that would be fine but now. I collapsed last Saturday & my daughter had to call an ambulance & I’ve had to take a cab to work and back & will again tomor! I can hardly walk without going weak in the legs & I get weak & panicky. I think a proper diagnosis Would calm me. I’m getting anxious, frustrated & depressed.

    4 comments