ARDS Support: my story and looking to help other survivors

Hello @donna562 ! I wanted to respond to your question re: what to do next for your memory. @jready had some really great tips below. Anything that stimulates your brain is helpful - crosswords, puzzles, games/apps on a phone or tablet, reading, etc. If you really feel stuck and if your memory difficulties are causing you daily troubles or are interfering with your life, consultation with an Occupational Therapist can also be helpful. You may have already worked with this team, but if not it might be something to discuss with your primary care provider.

Greetings, Steve, and all who have posted here. My name is Theresa and I am a twenty-year survivor of ARDS. Tonight I decided to find someone to reach out to following a disappointing first appointment with a new primary physician here in Albany, New York. She had very limited time and didn't seem to realize that it was a new patient visit. I brought up my ARDS experience and before I could really say anything about it, she remarked that it was twenty years ago and couldn't really be a current factor in my health. My mouth dropped and my heart hurt. I am pondering how to write to her to suggest that it would have been more productive if she has exhibited some curiousity and asked me what I meant instead of making an erroneous and dismissive conversation stopper. She then said she would see me in six months and left the room.
Before writing this, I found some great material at the Mayo site that may enlighten her, which will be sent along with my notification of termination of care.
I have an appointment with a different primary care person next week! In the years following my hospitalization, finding informed, curious, and compassionate care has been a challenge.
There is so much to say here I hardly know where to begin, so I will start by affirming the long term memory problems I deal with. I am so grateful to everyone who has commented on this site about it - this is the first time I have felt come companionship with anyone else - thank you!
I can still remember (hurray for me!) the early years in my recovery when I would try to go somewhere only to find myself simply not knowing where i was going or where i was or what to do to find my way! I could hear by brother's voice in my mind saying "above all else, sister, don't panic!" That would cause me to laugh out loud and relax and eventually I would find my way.
Much more seriously, though, is that I found myself misquoting authors and inaccurately remembering things I assumed I knew correctly; as a public speaker I quickly saw what a disaster that would be for me professionally. On the other hand, I also realized that since I no longer have perfect recall there are some pluses: my ARDS memory malfumctions gave me a sense of humility and removed the enourmous pressure to always gets things "right". I have never, however, returned to my profession, had to retire early, and generally, honestly, feel that at age 52 my adult life was effectively aborted (and that is a deliberate choice of words, aborted).
The diagnosis I left the Ohio State Wexner Medical Center with is "ARDS with Hospital Complications", though there is no wirtten detailed explanation about what those complications were. One was a terrible fall that resulted in three back surgeries over the next eight years; these operations in and of themselves were successful; however, they have resulted in scar tissue which has caused peripheral neuropathy, very painful, which impairs my daily life, making it difficult to walk and causing excruciating pain. The last three years of effective physical therapy and pain management have been life-saving.
I suppose I might close for now though there is so much more I would like to share.
Please know how siincerely I thank all of you for your postings; you have given me that extra affirmation of post-ARDS reality which now fuels my confidence is dealing with that first doctor and gives me the courage to tell her that my experience with ARDS right now, twenty years later, is real and deserving of care.

Welcome Theresa!! Glad you found us. Most of us probably have similar stories with providers; I know have! You really can’t change their minds although it would be nice to do that. Hang tough! You got this and we’re here to help as best we can.

I add my welcome, Teresa. Like @plexiclone, I, too, am glad you found us and that you found info on Mayo Clinic's website to help you educate the MD. She will benefit from your patience in explaining the patient perspective and how undermining her comment was in building patient-doctor rapport.

I will be interested to hear how your appointment goes next week with a primary care physician and with the follow up with the first physician. Please come back to tell us how it goes.

Thank you, Colleen, for your warm welcome. I feel comforted my your invitation to come back and share how my new appointment goes next week; I don't expect to see the first one again; will certainly get the Mayo print-out to her with some personal feedback. I read my post out loud to my oldest daughter, who is very interested and understanding, and my sister, who seemed astonished by what she heard! No one in my family is ever willing to help me recall events or to share any of their own feelings...perhaps my posting will help open the door as I would really like to make my experience, as old as it is, real. The silence is deafening! More later...sincere thanks, Theresa

Isn't interesting how different family members react. It can be hard to family members to recall the events or share their feeling. Post-intensive Care Syndrome affects them too.

@seanne shared in another post "“Various family members stayed with me around the clock in the ICU. They experienced my frightening ups and downs and the reality that I might not survive. Once home I was full of questions about what I'd been through. It didn't dawn on me that asking about my hospitalization continuously re-exposed them to their own ICU trauma.”

I wonder if @plexiclone @seanne @rosemarya @rckj or @andreab might have some tips to share about encouraging family members to share, support and fill in some of the blanks?

I have asked people who were with me about what happened and most are forthcoming. It’s interesting getting different viewpoints from each person who was there.

Enjoyed your story. Thank you for sharing. Been through an amazing journey myself.

Tell us more, Lauren. When did your journey start? What words of encouragement would you give others?

My journey began January of 2014. I ended up at a local hospital with double pneumonia that led to H1N1 from 2009 which then led to ARDS. Had to be put in a coma, paralyzed and put on life support for 6 weeks. Six hospitals in five months where it was determined I had a stroke while in the coma resulting in weakness and numbness on my left side. Had to learn to walk again. Stroke has caused left side of both eyes to be legally blind BUT today I see things I've never seen before...thank You Jesus! This critical illness has also caused painful neuropathy. Even through all the pain and suffering I am so thankful to everyone who was part of my survival. With God's help and support from my family and friends,
I chose to take what happened to me and make it as positive as I could and fight my way through. Although it was very difficult at times, I knew I had so much more to do with my life. God has a plan and a purpose and I knew He kept me here for reason. Through my journey, I want to inspire others to choose: FAITH over hopelessness, JOY over depression, PURPOSE over pain, GRATITUDE over bitterness, DESTINY over defeat and VICTORY against all odds!