Post-Covid Update from my Wife, Sandi Zack

By Sandi Keiser-Zack, Roswell, GA – June 2021

PLEASE take the time to read my personal post-covid update and listen and share this heartbreaking story from CNN (even if you already watched it).?

This beautiful wife and mother took her own life after suffering through more than a year of post covid severe and debilitating symptoms.

CNN Video Link - Post Covid Suicide

Her symptoms are like more than three million others in the US who continue to suffer from the after-effects of the covid virus… myself included.

HEARTBREAKING

This heartbreaking story of suicide due to long covid is not the first and sadly may not be the last. It is time for people to begin to listen, learn, and understand that approximately 1 in 10 people who have had covid suffer from the long-term effects. Post covid is REAL and is affecting us in ways you cannot imagine unless you or a loved one are living through it.

CONTINUED FRUSTRATION

There needs to be more research, more funding, and for the medical world to step up, believe in our symptoms, take is seriously, and collaborate with their peers and their patients. Doctors that simply work in their “silos of their specialties” are in many cases ignoring us or telling us “It’s all in your head.”

I am personally tired of doctors not believing me when they cannot physically see my symptoms or cannot find a diagnosis on a specific scan or an X-ray. This gaslighting is a very common theme of many long hauler’s experiences.

THREE MILLION PEOPLE SUFFERING

Three million people are not making up the long list of symptoms which can be debilitating individually and, in many cases have taken over multiple systems in our bodies. We are not spending thousands of dollars on uncovered medical care and hours upon hours bouncing from doctor to doctor for the hell of it.?We could not make this up if we tried.

If you personally had covid (or not) and you are NOT experiencing these post (long hauler’s) covid symptoms…THANK YOUR LUCKY STARS and please, please do not judge or claim to know more than we do about what our bodies are going through. Instead…read, listen, learn, and advocate for those who cannot.

NO FORMAL DIAGNOSIS

Our quality of life has been greatly altered due to covid. Many of us cannot work and in my case, I have also been told by my doctors not to drive. Many have no income. Many are unable to provide for or take care of their families. This is a DEVASTATING illness. Having to continuously justify our illness to friends, family members, employers, and doctors is an unnecessary added stress that none of us should have to deal with.

HELP IS OUT THERE, BUT APPOINTMENTS ARE FEW AND FAR BETWEEN

While there are many covid clinics across the country now helping post covid patients, there are just too many of us in need of these specialists and the wait to be seen is long.

• I am on a waitlist for the ONE doctor in GA who works with autonomic dysfunction (POTS) and my appointment is 5 months out at the end of November.
• I called Vanderbilt in TN for the top docs in this expertise and the wait there is 8-10 months.
• This vicious cycle seems to never end. See one doctor, get referred to another, and then wait 6 months to get in.

GASLIGHTING AHEAD

I have now been seen by multiple specialists, some who have said they cannot help me, and others who have prescribed more medicine in six months than should be prescribed in a lifetime (none of it helps).

In these appointments, I have experienced doctors and their staff telling me:

“You need to calm down.”

“The tests show there is nothing wrong with you.”

“It’s all in your head.”

“You could not possibly be experiencing all these symptoms.”

“You should see a psychiatrist.”

I have been laughed at and ridiculed for asking for help with disability benefits as I explain why I cannot work. It is a true nightmare and typical of many, many other long haulers experiences (as documented in our long hauler support groups).

And to those who blame our long covid issues on anxiety alone, you are wrong. Everyone dealing with Post covid absolutely recognizes that mental issues are involved including anxiety and depression, panic and for some PTSD. Personally, I am in therapy to help me through the anxiety I feel dealing with the lingering symptoms of covid.

However, these mental health issues are NOT the CAUSE of our symptoms but are occurring as a RESULT of our symptoms.?

I cannot repeat this enough: They are NOT THE CAUSE of post covid symptoms (as is often insinuated by doctors in various specialties who simply don’t have the answers and will not look beyond the narrow scope of their practice to collaborate with other doctors) but the depression, anxiety and panic ARE THE RESULT of dealing with the symptoms of post covid and the fear of what is yet to come.

IF YOU HAVE NOT YET LISTENED TO THE ATTACHED STORY, PLEASE DO

The beautiful woman in the news story… she needed better health care and mental health care due to her post covid symptoms becoming painful and overwhelming. She like all of us needed to be heard, to be believed, to be taken seriously, to know that the world hears us and is doing something about it. It is heartbreaking in so many ways to think that she was unable to hold on a bit longer in hopes of treatments becoming available. This vicious cycle of long covid took its toll and she took her life. It is devastating and I continue to shed tears for this family.

Thankfully more and more long-haul patients are seeking help for the mental health issues they face due to covid. And many of us use social media and join groups like “Survivor Corps” and other long covid sites to help us through our battle. We are supported in these groups by those who share similar experiences. But is not enough. More has got to be done to prevent another long hauler from tragically taking their life and more has got to be done to educate people and most importantly the medical community, about long covid and its effects.

THE FUTURE MAY NOT BE SO BRIGHT

I personally am in no way suicidal and have never thought during any of this disease that I would be better off taking my life. However, the unknown, along with being unable to work, drive, and the fear of being unable to have the quality of life with family and friends like it was pre-covid is terrifying and incredibly unsettling.

I continue to have all the same symptoms that this woman in the story had, plus others. Some days I am moving around and have a few good hours where symptoms are calmer, and other times I cry myself to sleep in discomfort and pain wondering if I will ever get my life back. I often fake being well to be “present” for my family and friends and not miss out on important time with them. But I ended up paying for attempting normal activity for several hours or days later. Too much movement or activity causes symptoms to increase in intensity. After more than six months of this… the fear that my life will never be the same is very real.

EVERY DAY I HAVE HOPE, BUT THE REALITY MAY BE CRUEL

My primary doctor just yesterday shared with me while doing a mental health check, that while she is proud of me for remaining positive and for continuing to try new things and do what I can to help my body get stronger, I need to understand that “there is a chance I may never get better from this.” She was being real with me, and I although I cried my eyes out in fear and anger, she was right in putting things in perspective. There are no more answers today than there were six months ago when post covid symptoms began for me. It is hard to imagine what other patients are feeling and experiencing who have had these symptoms for well over a year now.

OUR BATTLE IS NOT JUST PHYSICAL AND MENTAL

• Long-haulers are also dealing daily with insurance companies who are pushing back on honoring medical benefits or disability benefits from plans that we have paying into for our entire careers.
• Doctors’ offices and hospitals that put in the wrong code for procedures for patients must fight with them to correct it (so insurance will properly cover the cost) while simultaneously fighting off collection companies who are trying to collect a bill that was processed incorrectly in the first place.
• We have had to beg employers, who ignore us, for accommodations and for information about our leave and even if there will be a job to come back to when we are physically able to return to work.

It is outrageous that we must deal with ignorance on top of illness when our focus should be only on getting well. It is difficult enough for long covid sufferers to deal with the debilitating symptoms. I continue to suffer from symptoms brought on by covid. I had NO preexisting conditions other than allergies and allergy induced asthma.)

I now have:

• severe tremors
• an odd buzzing or electrical current throughout my body
• heart racing, minor swelling, and palpitations (pericarditis/tachycardia)
• dizziness and balance issues (diagnosed POTS)
• chronic joint pain
• muscle aches
• debilitating headaches and pressure
• brain fog (memory, loss of words, train of thought, confusion)
• eye pain and blurriness
• stomach issues
• an ever-present fatigue that is never better, even when I do seem to get some sleep

It is time for action on the part of our government to make long covid a priority. If a vaccine could be made available in record time, then more research should be in place to find answers for the long haulers who desperately need to know that there is a light at the end of this dark and scary tunnel. It is also imperative that the medical community should work together, not in silo’s, to treat post covid patients.

PRAYERS AND HOPE

My heart aches for the family who lost a mother and a wife due to long covid. I remain hopeful for myself and for all those suffering that someday (soon) new treatments will be found. My prayer is that no other family must face such a tragedy and for all to get back to a life we once knew pre covid.