Scroll to see the grosser picture xD The feeding tube has been healing beautifully. We removed and replaced the gauze today, and there hasn’t been any bleeding around it since. I am going to start looking to order re-usable pads to put around the tube. I am starting to schedule my feeding times again so they are only between 12am and 12pm, when I am asleep, and between 6pm and 8pm in the day, at the time when I get a little bit hungry during the day. Going a whole day without eating sort of throws one off of their schedule.
For pain, I still have to be on 2mg of dilauded every 2 hours through IV so that is unfortunate. I may have a secondary infection, a possible UTI that is making the pain increase so intensely. I really want to get on pill versions of things as soon as possible as I can put the pill versions through my tube, and when everything can be done through the tube I can go home. It is going to take 2-3 days to get testing results back for bacterial/fungal/etc infections.
We are starting “training” for the stomach tube today, which so far has just consisted of setting up the machine and doing my own water and medication flushes (a flush being just pushing it through the g-tube with a large syringe) so I feel this “training” will be a relatively fast process.
Fortunately all of my roommates this weekend were acceptable, no screaming people, no overtly obnoxious people, just a woman giving me advice on meditation which is always appreciated.
We still do not know when I will be able to go home. Of course we are still hoping that before Christmas will work, but we do not know at this point with the new testing that has to be done.
I am also having issues taking deep breaths, with the partial collapse of one lung it is important that I am doing “lung training” as well. They will be requesting an x-ray to make sure that I have no lung infection that could be causing this pain.
I have yet to go back on my blood thinners for my bilateral pulmonary embolii, but I need to heal fully first so the bleeding from my stomach does not get out of control.
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So, I have a problem. After being diagnosed and treated with POTS for 8 years, I’ve received this letter, which is a bit inconvenient to say the least. •
I’m more confused than ever about what’s wrong with me, it feels like I’m back at the beginning again and don’t have the answers I need that give me a reason for experiencing all of these symptoms. • •
I still feel the same and have the same symptoms that I had 8 years ago, and it was almost good to have something that could put a name to how I was feeling. •
Now this letter has made me doubt myself, I still feel ill and experience the symptoms, but now a name has been taken away from me I don’t know what’s happening, almost after all these years of going to various hospitals and missing school or events or parties and feeling ill for so long, I’m wondering if it’s all in my head, which is exactly what I felt before I was diagnosed. •
I’ve seen dozens of specialists that have told me that there is something wrong, but again I can’t help but think, am I making a big deal out of minor issues? I have so many questions that I thought had been resolved but have now creeped back into my brain making me doubt everything. Obviously I still have the other diagnoses but that’s not enough. •
Amongst the feelings of confusion is the feeling of being lost. What is wrong with me? Is there a diagnosis that hasn’t been considered? If I discover another chronic condition that explains all my symptoms, will the Dr take me seriously? •
This letter has not come at the best time. I’m considering dropping out of university because I don’t feel well enough to carry on, but now I don’t have an explanation for it. •
All I want is a name for what I’m feeling, so I can take control of it and understand, but I don’t, and I don’t know what’s coming next which really scares me. •
Ripper doing overhead jerk lunges #stability for us hyper mobile folks
This is real, this is important, this is hard to write. So, for the last year and a half or so, I’ve had increasing dysmotility, weakness, and lack of feeling in my limbs, along with past odd MRI results. After about 6 months of testing, we finally got answers- mitochondrial neurogastrointestinal encephalopathy (MNGIE). MNGIE is an incredibly rare form of mitochondrial disease, that’s progressive, leading to increasing dysmotility, intestinal blockages, malabsorption, and limb weakness. It also often results in premature death.
This is startling, this is very difficult for me to deal with, but I know so many people have my back. And I’m still here, determined to make a difference. I’m here to lend an ear to anyone who needs it. This will not hinder me, but instead drive me to love more, care more, make more of a difference. I’m just a message away, loves. •
Maintaining a strict homeostasis with conditions like Dysautonomia/MCAS is critical! I can't say it enough!
It's taken me two years to get to the point I am at now where my body can handle stress and not spiral out of control. My father passed away last month and continued to make my health a priority because I know what it's capable of otherwise. I've even cancelled my Neurosurgery consult that was priority...twice now...😬 #EDS#dysautonomia#pots#mcas#patientadvocacy
Nyttig läsning både för personer MED kronisk smärta , och för personer som ” handskas ” med människor som lider av Kronisk smärta .. Det är så sjukt svårt vissa dagar, det är mycket pendlade i humör och mående för mig just nu .. Saker ställer till livet , gör att man tappar sugen vissa dagar , men sen nästa dag känner man sig oslagbar ( en stund iaf )... Ja ... Hjärndimma ikväll ... Så jag skriver nog massa dumt bara ... Trötthet ... En liten del ångest ... Och denna huvudvärk som nu hållt i sig i ca 20 dagar , konstant ... Det är inte konstigt att man längtar bort ibland .... Helt slut på skedar ikväll ... Dom va slut runt lunch ... Varför så mkt timmar på dygnet och så lite skedar att spela med .:. God Natt ! 💫🌛💫 #spoonie#outofspoons#eds#ehlersdanlossyndrome#fighteds
Thank you to everyone who has participated in our first 4 Holiday Giveback Photo Challenges! Now, on to Week 5: Show us your favorite UGLY holiday SWEATERS!! Post a pic with the #teamdafgiveback
You have until 11:59 pm on Sunday night to enter! 😴 One participant will win a sleep mask! All participants will be entered to win one of 3 Team DAF Comfort Kits, which include cozy blankets, cash and more! Go to http://woobox.com/n4iomn for more details! Link in profile.
Base cremosa ELF Tinted Moisturizer SPF20
O Tinted Moisturizer é justamente para hidratar e cobrir pequenas imperfeições, sem ficar aquela aparência "pesada". Essa base hidratante com cor, possui FPS 20, sem falar nos ingredientes ativos: Aloe Vera, Pepino e Vitaminas A,C e E. Super refrescante e hidratante.
O produto tem 25ml e rende bastante, a consistência é cremosa e possui um cheiro suave.
I got a secret! 😜 8lbs ankle weights smuggled under my scrubs because leg/glute gains are imperative! My coworkers giggle when they catch me doing squats, lunges and calf raises in the hall but it's cool. I do it for me.
My Occipital Nerve Stimulator battery is located in my upper chest and the incision is more painful than my head incision. The surgeon creates a pocket in between the muscle and breast tissue so the battery can fit in the pocket in hope that it’s secure enough so the battery is unable to move. You can imagine how painful, sore, inflamed and tight my chest is feeling, it feels like someone has shoved a huge rock into my chest and there isn’t enough room to hold it. Hopefully with time my body will adapt to it and the battery will become more comfortable in my chest. I can’t sleep on my side yet or my front which I’m really missing but it’s far to sore, tender and painful at the moment. Taking paracetamol for the pain and ibuprofen for the inflammation. I’m slowly using my right arm more and more, but obviously I can’t do any heavy lifting on that side for a good 6-8 weeks, but it’s recommended to do gentle exercises so you don’t get too stiff or a frozen shoulder. My scar on my head is feeling very tight, stiff and uncomfortable but I have to remember this will ease over the months. Remember never be ashamed of your scars, because they tell a story of the hurdles you’ve overcome and the struggles that you survived 💜
This picture may look like just a cute/typical "warming your hands by the fire" picture, but, there is SO much more story behind it.
At greenfield village, every firepit [aka place to warm up] is in the snow, mud, grass, up a hill or all of the above.
Just to get me to some sort of warmth for this picture to be taken, Alex has to push me up a curb, get stuck in mud, slip on ice, push over grass and almost flip the wheelchair.
While this picture was being taken, You would never know the agonizing, bone breaking pain my hands were in. It was so cold that my arthritis filled fingers locked up, and were so tense that as they warmed up, they dislocated. To find relief, I had to stick my hands over a H O T fire, get burning smoke in my eyes and lungs, and pop out a shoulder. Its just what you have to do sometimes!
Nobody passing by, or seeing this picture now, would think twice about what was going on. "Oh, she's just warming her hands" This picture puts into prospective just how invisible, invisible illnesses can be. #elhersdanlos#eds#edsstrong#invisibleillness#teen#zebra#like#lfl#follow
hey it's Ally. this is my sweet kitty Babuhs! she wanted to say hi to all of her mommy's spoonie friends and she wants to send love and snuggles to all of you! babuhs and i hope today is just as magical as you all are!! 💜 thanks for being here. ~Ally