Post-COVID Syndrome is real

Georgia, I'm so glad that you were able to convince your PCP for further testing. You may be interested in connecting with other members dealing with lung cancer in the Lung Cancer support group here: https://connect.mayoclinic.org/group/lung-cancer/

Jennifer, it sounds like you do a lot of research to find answers and that you leave no rock unturned. Good for you. Have you always done Pilates or is this something you recently started? Have you noticed improvement in fatigue by adjusting your physical activity to your ability?

@mothertheresa3 @dandydon @nlc @ellen307 what small steps help improve your fatigue? What do you have to avoid?

I am a retired oncology and bonemarrow transplant nurse I did do pilates and it really restored my strength and confidence.

Jennifer, as a BMT recipient I have to say thank you on behalf of everyone whom you helped get through some of the worst days of their life. You see us at the lowest point in existence and help us rise like a phoenix out of the ashes. Or I’d like to think more like a caterpillar that turns to mush and emerges a Monarch!
Dramatic, yes! LOL. But that’s what it felt like. 😉
I thanked my nurses every day for just being there! Can’t imagine the toll that has to take on the psyche daily and yet they remained cheerful and upbeat. I’m sorry you’re now dealing with your own health crises.
Thank you for sharing your story and what’s helping you recover.

Do your doctors feel the lesions that showed up in your brain are from Covid?

Well I know they did. I give credit to all of my patients young and old. As I became apart of their journey they have seen me through mine. When I was at my sickest I knew why people died from Covid. I really felt I had to fight my way back. I paid for many things out of my own pocket because I have 4 children and I knew something was incredibly wrong with me and I was terrified. It was only when they saw the lesion they knew something was indeed wrong with me. They worked me up for MS because my symptoms mimicked it. Everything I did was instinctual. I had to dig deep. I sought out the reasons why primitive people survived horrible things before. Basic Healing included what I call the 4 R’s Routines Rhythms Rituals and Remedies. Routines of daily life to provide feed back to yourself. Because I was very confused. Rhythms I remembered one of my patients told me while on hospice was his purpose in life was to be in. Coma to tell others how to get out of it. He saidHe counted and the music they would play in the room allowed him to find his way back. Rituals based in communities and connectedness like churches support groups traditions with in your family. Remedies based on diet and homeopathic supplements and oils. There wasn’t a dr that would stay the course. I just didn’t give up. We are the ones that the greatest influence in our own lives. We have to take responsibility for saving our own lives or recovering. It was a very lonely illness and recovery. I’m still not better but I am alive.

I wear a crysalys with a Monarch inside it’s made out of glass and gold. We will recover. Together.

Consistency lead to the improvement. I’d avoid over doing it. Don’t compare yourself to others. Know we will learn what made us different from those that didn’t not suffer as we have. Listen to you body not your family and friends

Jennifer, I have the same necklace! It holds a great deal of meaning for me as well. Symbolic of perseverance and change…metamorphosis.

What you’ve written is so eloquent and poignant. I’ve said this before but it’s demonstrated so well in your journey, “We never know how strong we are until it’s our only option.” It is amazing what we’re capable of living through and rising above, even if we’re just going by sheer determination and instinct.
The 4 Rs are crucial to existence. Most of us don’t realize this happens around us all the time. We take our routines, rhythms, rituals and remedies for granted. Thank goodness you had the presence of mind and the resilience to harness what you pulled from instinct to help get you through this horrible struggle. I think that ability is what often makes the difference between survival and failure. We can be surrounded by supportive family and friends, but ultimately, we do have to rely on ourselves for that spirit of endurance. Don’t give up that fight! Jennifer you’re a true inspiration.

I had a moderate case of Covid in August of 2021. Felt like bronchitis for me. Cough lingered until end of September. Then I got vaccinated and many symptoms came and went but one new one developed chest pain so bad I landed in the ER and Docs said it is inflammation. Mostly fine but one day I had horrible pain right side rib area by liver and threw up. Fine until Thanksgiving and it happened again. Then happened again today, it’s now December. So over it all coming and going.

All I can say is I am very sorry for the pain you are going through. I read your comments and was so hopeful it gets better.

@dcgirl1977, how is the inflammation being treated?