Hello all, hope everyone on the forum is finding answers and support. It has been a long while since I posted, felt a check in might be nice.
A looming question and personal observation related to APS diagnosis or living with APS...diet, hydration, exercise & stress management have truly been a contingent partner in my life along with proper medications. 2020 was a kicker here for us, our oldest son passed away suddenly. Living with such a traumatic loss is difficult for anyone let alone someone with medical barriers. Loss of this magnitude is overwhelming to say the least. Pain like I've never known inside. Goodness the never ending ache of him not here with us on earth, grieving slaps the heart around. Needless to say, my personal health took an intense tumble backwards. Currently, slowly, I am swinging back into physical stability. Which leads me to my post...for those of you that share similarities in physical diagnosis, remember to recognize the fuel that stress pours on top of your physical health and please seek help both with physician and counseling in order maintain what strength that you can. The shock in the loss of my son, caused my nervous system to collapse. I could hardly walk as my entire body shook uncontrollably, the pain was through the roof, I barely functioned for most of the year. I could not find my way out of the mourning or the physical backlash that my body was throwing around. I held onto my doctors hand and my families so tightly along with my faith. Listening and leaning until some similance of strength arrived.
As of today, I am back to walking a mile, eating the right foods & hydrating every hour. Sleep is difficult and this has been a hard slump to come out of. Proper sleep is tremendously important for our immunity. With COVID we were not able to have a funeral for our son, which left such a massive canyon in our families hearts. So my husband and I purchased a huge stone that allows water to pool on the top much like a water feature and we are having his name and dedication engraved and it is now his headstone in the middle of our garden which is now a park memorial in his memory. Our family and his friends are able to come over and sit on the park bench and visit his headstone and watch the birds bath on top of his rock. Finding peace in the middle of the storms is so vital... With physical barriers, we must recognize the importance of the simple methods related to nutrition, exercise and professional supports, we must do the "work" so to speak.
So to all of you that have your own barriers in life along with swimming in the chronic pain and physical barriers....breathe....take care of your vessel and mind...count your blessings & do as your body needs you to do because so many love you and need you present. My son would want me to fight like a champion, I hear him cheering me on to get back out there and walk my daily mile or two or three and to turn away from stress foods and sip contently on healthy anti inflammatory foods and hydrate properly as our blood requires it. We must be responsible with our barriers. Our barriers must not steer our focus because life is precious. I hope this post brings some loving push to anyone that needs it.
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beccafullcircle
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First of all I am so terribly sorry for your loss. I feel your pain and can’t imagine what you have been through. Secondly, I can’t praise you enough for your attitude. For crawling your way back slowly for the rest of your family and friends who love you and want to see you feel better. Life will never be the same but you will have a different life with a new meaning and I’m so proud of you for being strong. Your memorial and water feature sounds beautiful and I’m sure you and your husband will find it will bring you great comfort. With my very best wishes x
There is no reply to what you have been through and going through. I'm so sorry for your loss.Star 13 has put everything into words that most of us feel reading your post.
The strength you show knowing what your son would want seeps total admiration to you.
Thank you for posting this heartfelt account, none of us can say we understand but we feel empathy and respect.
Your words will totally help all that are grieving, take strength from your giving to others, that takes a really special person.
I am so sorry your son died last year. You have been going through an unbelievably painful time. What you have written, though, is truly inspiring and very helpful to those like me who also are struggling with bereavement. My husband died unexpectedly last year. Both his parents outlived him. It has been hard for our children.
I will reread your words many times. Your faith and strength shine through and I know what you have written will help many many people who are suffering loss as well as coping with chronic illness. Sending you love and prayers and thanks.
My heart goes out to you, I also have had a child taken suddenly; my 15yo daughter. I was healthy then, but the grief really is all consuming, I feel it did bring on my APS. Whilst life will never be the same again for you and your husband, it sounds like you are doing all the right things and have a good support system. Just be kind to yourself on those bad days. Take care. xx
Yes, you have had a hard year. But I agree, your attitude is inspiring. Keep on keeping on and, yes, your memorial garden is a perfect reminder of the beauty and unity of God's creation.
I know you are a woman of a deep and abiding faith and I’m glad you have this personal relationship to help at this time.
I’m thankful for the stone- it’s meaningful and sounds so tranquil. A true place of gathering among dear friends and family. An inner sanctuary- in a beautiful place - with your inner circle.
His beautiful spirit will be a part of you all there.
“I go to to the Garden ... while the dew is still fresh on the roses...”
The dew will always be fresh on the roses. This is the beauty of the promise and the faith.
I’m so profoundly sorry for your pain.
I hope you see will color in your world again, I know it must have lost its color . You are an artist if I remember- you must start to slowly paint again and see color, as it’s a gift you have.
When you are able, in your own time, will you pain this beautiful garden and stone with the reflecting water on top? ( sounds like an amazing thing to paint!)
I’d love to see it....
I hope you are able to resume your walks soon- this beautiful spring weather beckons!
You know all the things to do- and dr Jason Knight of the university of Michigan is leading the way in APS and Lupus new research and possible treatments. ( Hope springs eternal!)
Hugs and a kiss on the cheek! Please keep in touch and thank you for sharing your heart here.
Thank you for ALL of your support and internet hugs and prayers....Oh what a reunion in heaven we will have. Remain strong everyone...much much love. Your words came at just the right time today...thank you again, hope it helps all of you also
I am so sad to hear your news about your son, my heart goes out to you. I hope your entire family and friendship circle has drawn you close to them. You are clearly doing you best to recover as much as you can, and we are here for you. Please come and talk to us on here whenever you feel like it. MaryF xx
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Another positive beta-2 glycoprotein but numbers have dropped since last test is this normal?
This is my 1st post is their such a thing as a silly question?
Not sure if numbness is from the APS or from issues with my neck
