LC Is Just Overwhelming

Hi Ckmako,
How terrible for you! What an awful ordeal you have had! However, you are not a failure. Being ill doesn't mean you failed at anything. You just got sick like we all do from time to time but your sickness was much more severe. The fact that you are only 28 is a plus. Your body has more of a chance of recovering at that age than if you were an older person like me. I'm 78.

I would suggest that you research the side effects of all your medications and treatments such as chemotherapy. That may help determine some of your problems. You can go to the Mayo Clinic website to do the research. They are really good for that and you get correct facts. Share the information that you find out with your doctor. Everyone is different. What may be causing problems for you may not bother someone else at all.

I would also suggest that you ask God for help. He made you and he can fix you. Just talk to God like he's your best friend and he is. It really works to pray. Prayers do get answered. My husband recently died of lung cancer. We prayed together a lot and he had lung cancer for 14 years before he died. He also wasn't uncomfortable or in pain at all during those 14 years until the very last few days of his life. I like to think that is because of our prayers.

Have you considered writing a book or an article about your situation? It's very unique. Just what little you wrote here, was very interesting. Also you write well. However, don't submit anything unless you know you are going to be paid for it.

I wish you the best. I will say a prayer for you.
PML

You have an incredible story of survival! So glad you made it. I’m sorry that LC is preventing you from living the life you want. It sounds like you are a brave person with a lot to offer.

Have you explored treatment in a long covid program or department?

Have you sought legal advice on your disability issues and a social worker who can provide you referrals for resources that might be useful?

I hope you can get relief and help. Best of luck with your journey.

Hello. My heart goes out to you. I cannot imagine having that much illness at such a young age. I hope you are feeling that other's care. 🫂

Hi @ckmako. First I hope this comes across in the heartfelt helpful way intended as I too am going on 4 yrs with reinfection this last June which has affected my communication more🙃 I hope its ok I share so many of us here have harrowing stories and that in no way is to say yours was not beyond traumatic. Just the opposite. Your fighting spirit has landed here with so many that will offer you years of advice that helps them through. May I suggest, if you dont already have, a mental health provider, as mine shared its proven these challenges are new unknown territory and fighter or not it can help relieve some of the stress that perpetuates your long covid challenges. Most healthcare systems are starting to implement special departments to assist long covid patients, mine is called Enhanced Care Management (ECM), yet many in the healthcare systems are still unaware of the term long/post covid so physician referral to patient advocate/social worker will hopefully be quickest and less taxing physically on you. As my provider shared, be respectful/brutally honest of your day to day challenges substantiated by daily journaling and taking pictures/videos of any visible symptom/reaction. This in turn will provide medical necessity of assistance you require for even the most basic daily task for obtaining disability with the assistance of this specialized healthcare department. If your system does not offer this, others have found links here to attorneys who have dealt with long covid disability that again you will have your necessary documentation of daily challenges they need🤞We are here for you and with the crucial pacing, assistance from others to lessen your burdens physically/financially/mentally, and your proven warrior spirit, you will notice healing and find contentment and joy!🌈

ckmako,
I am so sorry for all you have gone through with the horrible scourge of Covid and it's damaging effects.
Please know you are NOT a failure
You are living testament to your strengths and perseverance even with overwhelming challenges and often not feeling well.
Hopefully there are improving medical support and treatments.
I too have long Covid for three years following a five day hospital stay and treatment with Remdeivir.
I now have a subsequent resultant autoimmune-Sjogren's Disease and Myositis with neuromuscular issues and persistent damage to my GI system tissues and the nerves innervating swallowing and peristalsis. It is a daily challenge and my life does not resemble what life was like prior to Covid.
There have been providers who have been dismissive and minimizing of symptoms that has slowed
the medical process. Fortunately I was able to get into a long Covid program, which has helped because of the knowledge base about Covid and what it does to multiple body systems long term.
Also recently finding these Long Covid patient testimonials and online LC Covid support groups has been helpful.
And new information is coming in to the medical literature each month
So if hopefully things can level out and even improve.
I have had to advocate very strongly for myself and didn't realize this until eight months into post Covid. If you don't advocate for yourself things will not progress in terms of diagnostics or treatments or improved knowledge for providers.
Take each day one at a time, rest when needed, and if possible make plans to do something enjoyable for yourself, even if it isn't the way you might have recreated before.
If you have a particularly hard day,
acknowledge that and do what your body needs that day and know you are doing the best you can. You did not cause what happening and be gentle to yourself.
Remember each day is a new day and a reset, even if temporary.
You have so much to offer and have helped by sharing your story here.
Thank you and all the best to you!
❤️🙏🏻🕊️

When my daughter had Chronic Fatigue Syndrome, now identified, along with long COVID as one of the post-viral infection syndromes, it was a lawyer who finally got her approved for disability and the disability insurance to approve her for payment. Without a lawyer, nobody in any position of authority paid any atention to the reams of paperwork that we were asked to file.