Our newest edition arrived in January! Landon is my 5th grand baby. We now have 4 grandsons and 1 granddaughter 💞. I just came back to The Mighty so this is why I’m posting this now and not in January. Because of Covid, I didn’t get to see him or hold him for 6 weeks. My daughter caught Covid the week she delivered. Landon caught Covid in the hospital. What a weird world we now live in. Everyone is fine so far. Long Covid will probably be a part of Landon’s life but we will have to see. Covid messed up his esophagus and he’s had burning pain every time he eats. A lot of Covid babies have had this. He was admitted to AI DuPont hospital where he was taken good care of. He’s on a new medicine that was brought about by so many babies being born with this same problem. It’s Nexium just like adults take but it had to be specially done for babies. They finally made this medicine because so many babies were being born with this problem from Covid. Before anyone thinks “we’ll it’s just heartburn” it’s not. Not for babies. This baby screamed and cried for the first 2+ months of his life. His esophagus was being burned and damaged. He’s on that great medicine now and Is a very happy baby! Drs. Say only time will tell to see how much damage the Covid caused. The same goes for all the other precious babies as well.💞💞🤗🤗🥰🥰🥰
Hello to all my friends on here who I’ve talked with, cried with and laughed with.
I hope that you will forgive me for abruptly leaving after I tried to come back last year. I loved being a leader and a group leader. I loved writing and sending out the funniest clips I could find. But more than anything I’ve missed your support and your encouragement and your beautiful hearts.
Well, I’m going to try again tonight. I think I’ve healed enough. I’m in a good place.
It was grief and emotions that kept me away for so long.
I’m still bedridden and in worse condition (physically) than before. But I’ll leave that “tell all” for another day lol.
To all the new people… welcome! You’re gonna love The Mighty! I hope to get to know you soon.
#Grief #ChronicPain #Depression #Fibromyalgia #spinal cord injury
Just thought I’d introduce myself
Before my illness/injuries took over, I used to really enjoy cooking— even thought about enrolling myself into a culinary arts program. However, I would eventually come to realize, through the years that it simply wasn’t meant to be.
My journey began in 2008, when I was diagnosed with multiple sclerosis. And despite having started a DMT (Copaxone), my symptoms took a turn for the worst in October 2013. One day, while showering, I got hit with an out-of-the-blue case of vertigo, resulting in a fall, which caused my lumbar spinal cord injury.
Despite my best efforts to communicate with my medical team, I wasn’t taken seriously. The only responses that my doctors repeatedly used whenever I’d express my concerns were, “Hmm… I’m not sure if this is from the MS”, or, “Why don’t we increase your medication dose and see what happens” 🙄🤕 This went on for about eight years.
By 2016, my digestive system decided that it’d had enough!!! And just like that 🏾it quit on me. I’d spend the next four years shedding a drastic amount of weight, being unable to keep any food or liquids down, and frantically searching for a doctor to actually listen to me. And all I had to show for my efforts was a traumatic brain injury I’d acquired in November 2018, after having passed out, being rushed to a hospital that was close by at the time, and receiving treatment for dehydration— but not the concussion I’d sustained from having fainted, in the first place. 🙄🤨
By 2019-ish, I’d finally found a team of medical professionals who were as compassionate as they were intelligent; and in March 2020, after I’d withered down to 105 lbs, I had a j-tube surgically implanted. It’s saving my life, for sure, but it still makes for a lonely existence.
Once my digestive issues were “stabilized” (new normal = permanent), it was time for me to get the rest of my poor, exhausted body taken care of. My new neuro team placed me on Ocrevus, which helps tremendously at keeping my nervous system in line; I also have a little helper— a port-a-cath— that gives my medical team the necessary access to my stubborn veins for blood work and infusion days (it literally took a whole team of nurses, and one uncomfortable hour to finally got my veins to cooperate before my port 😳💉🩸).
Next up was Pain Management. After several unsuccessful attempts of conservative treatments (crushing pain pills and flushing them into my tube), it was decided that I would be an ideal candidate for an intrathecal Baclofen pump, which I had surgically implanted in January 2022.
So, what brings me here to the forums? Isolation. As I mentioned previously, living life in a partially bionic body makes for a rather lonely existence 😔 After all, what are the chances of meeting someone else with MS, a TBI, an SCI, and a STRONG affinity for all things audio (unless it’s reruns of classic shows that I grew up with, documentaries, or pretty much ANYTHING to do with British TV, then nope, I probably haven’t seen/don’t want to watch whatever it is you were about to suggest 🤷🏾♀️🤣), who also enjoys Bible study, coloring, and word search puzzles? 🦗🦗🦗🦗🦗🦗🎤🎤🎤 (*ahem… um, hello… is this thing on?*)
Someone… Anyone… Bueller??? 🤓🤓🤓
Probably not… but a girl can dream, right? 😴🤣
At any rate, that’s my story. Hoping to find a lunch table to crash soon 👚👛🎀🛍💖🤣😊
Hi, my name is ElliesMom. I’m new to The Mighty and look forward to sharing my story.
#RheumatoidArthritis I was diagnosed with RA at age 24 and am now 75, fibro about 30 years ago. Lots of pain chapters--I learned from a priest friend who was also chronically ill to say--instead of I am fine--Glory to God in all things .I have been blessed with docs who "get it." I have been on Enbrel since it first came out and it got me out of a wheelchair. Sadly to say pain and its results have lead to a fall that resulted in a small spinal cord injury and fused c-3-c-7. Another caused a broken ankle on which I have had two surgeries and yet another in which I sustained a broken hip. Needless to say, I have my own internal weather report. My children were raised with me reading to them in my bed because in bed was all I could do--to having several years of leading a Brownie Troop from a wheelchair and to being forcibly retired from a job I loved when the RA got so bad..... BUT I am blessed to be able to babysit my beautiful grand daughters, drive a car, live on my own (after the falls my house was renovated to help prevent falls by my best and dearest friend.) I have a joyful life with various ways to adjust to my health. My doc says "You're in great shape for the shape you're in." PS Ellie is my little 4 1/2 pound dog who things she is a rottweiler!