I am expressing some gratitude today, that my 5+ year adventure with PMR seems to be tapering to an ending.
Today is my late son's birthday, he would have been 53 years old. His death in September 2017 broke my heart, and my PMR roared into a nasty flare that lasted for months.
At his death, I was near 2.5 mg prednisone, and doing pretty well with my taper. When he died, I rebounded to the dreaded shoulder pain and thus prednisone upped to 10 mg. I also began to experience horrid anxiety. panic attacks, depression, and fatigue. Nothing I did seemed to break the cycle, and I swirled in that slurry of symptoms for months.
Now, a year and a half later, I have begun to feel alive again. Some days I can go into my studio for a few hours, and feel creativity inching its way back to the surface.
I bring this story to the forum because you have been here for me through some of my darkest times. Most assuredly you have helped me through the long sleep less nights, when my brain monkeys refused to calm, and I needed distraction to appease them.
So thank you to everyone here...for sharing your PMR journey and for letting me bring mine to the table.
Together,we are a united source of support, information, and connection. Linked stories around the globe that nourish and give hope to folks just coming to know the Gorilla.
Gratefully, Jerri
🙏🏽💜💜💜
Written by
Purplecrow
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Thank you so much for sharing. As a mother I can’t imagine what you have gone through. So glad that things are looking better for you. Get back in that studio, he will be looking down on his mom with a big smile. 💕 maryanne
My love and admiration too. And I too can imagine your son smiling down on you and being so proud of you. My husband died 15 years ago but I still feel his presence daily. I was moving house recently and had lost my eternity ring, the last thing he had bought me before he died. Everything packed.and in removal van on drive. Waiting for the call to set off for new home. I saw a bit of dust on one of the bookshelves - decided to give them a final dust. Something fell off one of the shelves. My precious ring.
Nothing will convince me that my dear late husband wasn't looking after me that day. It made my move a joyous one. Thank you for your post and heart-warming share. And for the great reminder that this PMR/GCA
It is stories like yours that bring hope to all sufferers , both old and new , that there is a light at the end of this dark disease tunnel, and we can all find the strength to be ourselves again in the future.
Thank you , hugs , bee xx
Thinking of you today 💜 always a difficult day, a birthday of someone taken too soon.
Thinking of you on your son's birthday. He will be with you especially today. Great to hear your long journey is coming to an end and for sharing your story. Good luck Purplecrow
What a beautiful and moving post, thankyou for sharing your feelings. So glad you feel the stirings of creativity this should help you no end. All best wishes to you.
Thanks for your posting we lost our son in law of 32years He was 52 yrs old, passed away in October, such heartbreaking event. To see my daughter so broken
. And not being able to make things better for her is heartbreaking and my pmr flare badly
Your post give me some encouragement for the future
I know she will be better one day, but the journey there is a hard road having lost two sisters in the past .
My heartfelt condolences on the loss of your son, Purplecrow. Losing a child must be the hardest thing ever. Thank you for your message. It is truly inspiring.
So pleased for you. An achievement in a very very sad time in your life. You are strong and very brave. I'm sure your son is proud of his mother like you were of him.
Hi, recently came off Pn after 5 years after being on 3mg for the last year. There are some aches and pains and quite a bit of fatigue but quite bearable and may have had some impact on my getting osteoarthiritis. It's been a bit of "an adventure" but hopefully we can all at some stage get weaned off it.
Thinking of you today on your sons birthday. Glad you’re seeing some light at the end of the PMR tunnel. Thank you for your contributions to this community- your posts have helped me many times!! Take care.
Purplecrow ,losing you son was terrible,so very hard for you to have to come to terms with.l am so pleased that you are beginning to feel more alive again after what must have been the darkest time in your life.l hope that being creative again will help to shine some light into your life again.Sending you my love,and caring thoughts,Grants xx.
This story has touched my heart.I am new at this since just being diagnosed with PMR last Aug. I did not even know what it was. We have a developmentally challenged daughter who is 47. She was diagnosed at the first of August with Parkinson’s and the stress was so severe that when we were camping in the middle of Aug. PMR hit me like a cannon. The journey with pain and prednisone becomes overwhelming. Between caring for her needs every weekend as she comes home and living with this it is like my life is over.I was so active, dancing walking biking etc. And now nothing! I wish you all the best in what life has to offer.
I am so sorry to hear of your challenges. It may seem unlikely to you now, but things will get better as your PMR/pred journey continues and you find new ways to do things you love.
Dear Kemper, you have my utmost respect and empathy. My son was quadriplegic and lived with many challenges. I understand the cannon blast of PMR, and how all- consuming the early stages of this disease are.
This site is a wonderful inspiration. Just to read what others go through. Thank you for your caring. You will understand. The sun is shining today and Spring is on its way so hopefully things will look brighter. May the sun shine upon you and your family today.
Yes remember your posts Purplecrow when everything was more raw and how you always had time for others. Wonderful post of hope and reassurance. Pray that you may continue to improve health wise. Xx
It is wonderful to hear that you are coming to the end of this PMR Journey. My journey is only seventeen months thus far. Unfortunately, we share another Journey, the loss of our sons. March is a Bittersweet month for me also. March 3rd was the six year Angelversary of my son, Garrett. His birthday follows on March 26th he would be 28. Everyone's grief journey is so different. I wont share any platitudes etcetera but just know it does get better though I believe there will always be grief attacks and triggers but we get better at coping. A big hug to you. Janet
Oh Dear one, I am so sorry to know about Garrett's death. We do, indeed, share common journey with our children. My daughter and I have only recently begun to reconcile our relationship.
Thank you for your encouraging words, and the warm virtual hug. I return the hug, and want you to know you are in my thoughts during this month of March.
I am home laying on the sofa I am home laying on the sofa for day 6 of truly awful case of the flu for the second time. I guess that's the prednisone drawing it out? I had eye surgery in November that was not successful so I do not read nearly anywhere as much as I once did but try to hit the highlights when possible. I did want to add when I saw about your daughter and your estrangement, I am so happy for you. Anything is possible. I say that because Garrett's older brother, my only child, Patrick, and I have been estranged for 10 years starting with the divorce from his father. I am taking a train down a week from Friday to see him for the first time in all this time at his home. I am over-the-moon excited. Just take it slow with your daughter. I learned my lesson trying to force it. ❌❌⭕⭕
Glad to hear the sun is rising again for you. Perhaps true creativity will be roused soon along with the sunshine and you'll be spending more time in your studio.
Hi Jerri, heavens you really have been through heart break but I’m so pleased that you are finding happiness amid such sadness. Your positivity is inspiring so please don’t desert us, keep in touch and let us know all is alright. Regards Tina.
Big big hug coming your way. Well done so very pleased for you coming though two difficult experiences I can’t express it properly but thank you for sharing.
I had no idea of the emotional trauma you must have been through and yet all this time you take the trouble to support us all. You are one he'll of a special person in my book Purplecrow. What do you get up to in your studio?
Oh how wonderful! I remember, as a young teacher, going to the cinema and watching a supporting film/documentary on making stained glass windows. I thought to myself at the time that if I hadn't gone into teaching I would have liked to have been a creator of stained glass. It is the only time I ever considered a different career. Am soooooo envious (in a good way!)
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